Peter Alexander on his sister, who is losing both her sight and hearing

Loni, Chicago IL — Thu, 19 Mar 2009 21:23:42 GMT

You are an inspiration to us all even the sighted and the hearing. We all tend to take things for granted but I believe your disabilities will bring out the best in people you encounter because of the way you are chosing to deal with them. People will see your determination and passion! God bless you!

Peter Alexander on his sister, who is losing both her sight and hearing

Tonya — Thu, 19 Mar 2009 21:30:19 GMT

I have retinitis pigmentosa a degenerative disease of the retinas for which there is no cure. I will fortunately only lose my vision. I am proud to see that Rebecca is living each day with dignity and vibrance. I makes me less afraid of my own journey.

Peter Alexander on his sister, who is losing both her sight and hearing

All The Best, Philadelphia, PA — Thu, 19 Mar 2009 22:21:49 GMT

You are lovely, brave woman.

Peter Alexander on his sister, who is losing both her sight and hearing

John — Thu, 19 Mar 2009 22:53:45 GMT

Your plight makes me ashamed for every second I have wasted feeling sorry for myself. Your acceptance of needing help to get through life also applies to all of us.I use to think all I needed was money and myself. WRONG. Family and friends are worth more than all the money in the world. I will pray for u and miracles do happen

Peter Alexander on his sister, who is losing both her sight and hearing

Thu, 19 Mar 2009 23:02:24 GMT

You are truly a beautiful and inspiring girl and any guy would be lucky to have you! h

Peter Alexander on his sister, who is losing both her sight and hearing

MICHAEL ROSHAY ,PARK RIDGE NEW JERSEY — Fri, 20 Mar 2009 00:00:58 GMT

IM AMAZED BY YOUR STRENGTH.I HAVE JUST HAD WHAT I THOUGHT WAS A HORRIBLE DAY.BY CHANCE I CAME ACROSS YOUR STORY,IM ALMOST ASHAMED OF MYSELF.YOU ARE ON THIS EARTH FOR A REASON.STAY STRONG ,,I WILL PRAY
FOR A CURE FOR YOU.GOD BLESS YOU!!BY THE WAY ,I WOULD
BE LUCKY TO HAVE SOMEONE LIKE YOU IN MY LIFE.

Peter Alexander on his sister, who is losing both her sight and hearing

bill barkeley — Fri, 20 Mar 2009 00:27:52 GMT

I have Usher's just like Rebecca. I climbed Mount Kilimanjaro and summitted in 2007 to enjoy the greatest visual and hearing experiences that one can have NOW! Rebecca is living proof that Life Without Limits is possible and building a community around you that is based on love and sharing yourself with others is the only way to find true happiness in life. Thanks for sharing your journey with the world and being my friend Rebecca! Bill Barkeley

Peter Alexander on his sister, who is losing both her sight and hearing

Tracy A. wehringer, Plainsboro, Nj 08536 — Fri, 20 Mar 2009 01:05:33 GMT

How sad... what an amazing women and a terrific brother. I'm so sorry!

Peter Alexander on his sister, who is losing both her sight and hearing

Marc, San Francisco, CA — Fri, 20 Mar 2009 01:11:15 GMT

This message is for Becky from Marc & Sharon – your favorite ex-New Yorkers. We miss you so much and will be sure to wake up early to “see” you on television. All of us feel optimistic that the marvels of medical science will soon restore our vision and for you, your hearing as well.

Keep on spinning and please come to visit us in San Francisco!

Peter Alexander on his sister, who is losing both her sight and hearing

Raul — Fri, 20 Mar 2009 02:09:01 GMT

you are a great girl i will pray for you.Im sure everything is goint to be fine.

Peter Alexander on his sister, who is losing both her sight and hearing

Maya — Fri, 20 Mar 2009 03:04:48 GMT

You are an inspiring and honest person. Rock on.

Peter Alexander on his sister, who is losing both her sight and hearing

John from MA — Fri, 20 Mar 2009 08:42:40 GMT

For those of us who are suffering (from this or that), the video of Rebecca is both a consolation and an inspiration. I want to thank Rebecca for the video and her brother for the interview. The video brings me to tears. I think I've watched it 7 times in a row (I lost track). The animation in her voice and her enthusiasm about her friends and about all the chances she has now, her expressive sign language... All these speak of a woman who is not going to let the sorrows of life leave her with a life of sorrow. What a special video!

Peter Alexander on his sister, who is losing both her sight and hearing

Diane, Indianapolis, IN — Fri, 20 Mar 2009 11:06:01 GMT

You are blessed; what a fantastic person you are. My prayers are with you.

Peter Alexander on his sister, who is losing both her sight and hearing

ks — Fri, 20 Mar 2009 11:12:38 GMT

i've always been tyring to live my life exactly how you are doing right now, only without the conditions you are in. i really admire and respect your being. you are wonderful.

Peter Alexander on his sister, who is losing both her sight and hearing

Dee Marie, Minetto, NY — Fri, 20 Mar 2009 11:35:58 GMT

Your story reminds us all to appreciate what we have. To appreciate the little things that we experience daily…the birds chirping, a sunrise (or setting), the beauty of each season as it flows into the next; the sound of a loved ones’ voice, the sight of his or her face.

Your story is a wake-up call to a stop pity-parties and start enjoying life.

Prayers and thoughts go out to your sister and to your family.
Thank you so much for sharing this story with us.

And please remember…miracles happen…believe!

Dee Marie

Peter Alexander on his sister, who is losing both her sight and hearing

Hilary J., Dayton, OH — Fri, 20 Mar 2009 12:12:39 GMT

One of my dearest friends has retinitis pigmentosa and is going deaf as well. She is one of the most positive, strong, loving people I have ever met. Like Rebecca, she stays positive and upbeat about her situation and is an inspiration to all who know her. Good luck, Rebecca. With the support of your family and friends, you will continue to have a deeply fulfilling life.

Peter Alexander on his sister, who is losing both her sight and hearing

Sheila Young, Orlando, FL — Fri, 20 Mar 2009 12:12:55 GMT

Rebecca, I have RP, and am progressively loosing my sight, but thank God every day for my hearing. My prayers are with you and all that have this horrible disease and pray that you stay strong.

Peter Alexander on his sister, who is losing both her sight and hearing

RT, Atlanta, Ga — Fri, 20 Mar 2009 12:20:17 GMT

I have the "Sister disease" to Ushers and it's awesome that someone is publicizing this disease. EVERYONE needs to know about this and realize that there are people out there like us who are hit with this disease. The hard part about these types of diseases are the fact that these eye diseases finally have kill eyesight and hearing in the prime of most people's life such as 20's-40. This is not an isolated incident. Millions of people have this disease that transcends all people groups, age and financial status. Thank you for portraying this subject!!!

Peter Alexander on his sister, who is losing both her sight and hearing

Lisa — Fri, 20 Mar 2009 12:20:25 GMT

Rebecca, Your story is a real inspiration to me. I feel like I need to do more to enjoy and experience my life the way you do. I am really envious of he way you go out and do the things you dream of doing. We could all learn a good lesson from you.

Peter Alexander on his sister, who is losing both her sight and hearing

laurin mayer Toronto, ON — Fri, 20 Mar 2009 12:20:53 GMT

wow--
i just saw you and your brother on tv and I'm touched..
My eyes won't stop watering...

I live with a disorder, but a different type.
I, too. work not to let it defnine me.
I am as busy and as passionate as you can be. I try to really stop and smell the roses.

Thinking of you and smiling
Thank you for sharing

Peter Alexander on his sister, who is losing both her sight and hearing

S from CT — Fri, 20 Mar 2009 12:20:56 GMT

Rebecca is really an inpiration. I live with extremely minor problems in comparison. I have some hearing loss in one ear and I also have poor vision. When I fret that I can't hear someone or that I have to grab my glasses to see when I get up in the middle of night, I will think of Rebecca proudly and without any trepidation navigating the streets of NYC or leading an exercise class and going on each day with her full life.

Peter Alexander on his sister, who is losing both her sight and hearing

Mary jane Marek, commerce tpw MI — Fri, 20 Mar 2009 12:21:03 GMT

I have been there and did survive with some sight left. I can still drive but have no side vision.

Peter Alexander on his sister, who is losing both her sight and hearing

Dana Colwell, Frankenmuth, Michigan — Fri, 20 Mar 2009 12:22:11 GMT

Rebecca,
You are truly amazing! I am 39 years old and was diagnosed with Retinitis Pigmentosa 3 years ago and my sister was diagnosed 6 months ago. Your story is an inspiration to us all.
Dana Colwell:)

Peter Alexander on his sister, who is losing both her sight and hearing

Mary jane Marek, commerce tpw MI — Fri, 20 Mar 2009 12:22:38 GMT

Hi Rebecca, I have been there. I am still able to dirve. I have no side vision.

Best wishes
Mary jane

Peter Alexander on his sister, who is losing both her sight and hearing

Patricia, Baltimore, MD — Fri, 20 Mar 2009 12:22:49 GMT

I just watched your piece on the Today Show,and I do have to say: besides the fact that Becky is an inspiration, what really touched and inspired me is the love that surrounds her family. With all the difficulties in life, we should really remember every day to express love to our families.

Peter Alexander on his sister, who is losing both her sight and hearing

Carlos Smith — Fri, 20 Mar 2009 12:22:53 GMT

Rebecca you are a strong and beautiful woman I would love to follow your health and send words of encouragement!!! Do you have a web site?

Peter Alexander on his sister, who is losing both her sight and hearing

Benjamin, Mechanicsburg, PA — Fri, 20 Mar 2009 12:22:54 GMT

I am sure that you guys want to check any leads could lead to complete healing. In your search please check out www.globalawakening.com to read and watch the testimonies. It is the real deal and could help you out.(and it is free). In fact I would encourage you to go to a "healing school" near you. Also check out ibethel.com for other stories at Bethel.

Peter Alexander on his sister, who is losing both her sight and hearing

Zhan Caplan, Baltimore, MD — Fri, 20 Mar 2009 12:23:17 GMT

I echo the comments of everyone on here about what an inspiration you are to those of us without a disability who face paltry normal obstacles that life puts in our way. Look at all you do with such a positive attitude! I think that positive outlook is going to serve you well and I hope that research will uncover a treatment for you very soon!

Peter Alexander on his sister, who is losing both her sight and hearing

Greg H. , Ft. Lauderdale, Fl. — Fri, 20 Mar 2009 12:23:24 GMT

I just saw your interview and you struck some chords with me in several things you said one in particular is a lesson i always knew but was reminded of in October, that lesson was in our human interactions because you NEVER DO KNOW the load that people are carrying from day to day. I was diagnosed with cancer in October and while the news was devastating and i spent countless time in the shower crying and asking why? I realized that I needed to pick myself up by the boot straps and deal with the cards dealt to me. I just last week 3/9 had surgery and so far so good. Thank you for saying what most of us dealing with big things in our life are feeling. I wish you nothing but the best and will be praying for you everyday. I've always admired your brother's professionalism in reporting and have now seen another side of him, the love for your came out of the TV screen this morning. What an inspiration you both are to all of us. Thank you and nothing but warm thoughts and energy coming your way.

Peter Alexander on his sister, who is losing both her sight and hearing

Mary Kate, New Fairfield, CT — Fri, 20 Mar 2009 12:25:35 GMT

Thank you for sharing your story on such a little known disease. My brother-in-law, Carl Richardson has Usher syndrome. He is an inspiration to my children and I am going to share your story with them as you will also inspire them with your courage and grace.

Peter Alexander on his sister, who is losing both her sight and hearing

Kristian Jeanloz, Hope Valley, RI — Fri, 20 Mar 2009 12:25:45 GMT

Rebecca you are a remarkable young lady. Thank you for sharing your story with so many. I myself are being tested for Multiple Sclerosis. When we are faced with the unknown it is really scarry, but it forces us to grab the hands of time and seize the moment. Every day is a precious gift and we need to live each day as if it were are last. Thank you so much for giving someone like myself and extra boost this morning. I need it. My prayers are with you and your family that there will be a cure found soon. There is such things as miracles. God is awesome. We just need to belive in him. :)))))

Peter Alexander on his sister, who is losing both her sight and hearing

tm, New York — Fri, 20 Mar 2009 12:27:42 GMT

Thank you for such an inspiring story and for showing us that courage can overcome our obstacles. I too have been witness to another exceptional young woman, my daughter, who has experienced progressive vision loss due to another retinal disease--stargardt's. Thank you for expanding our understanding of disability and all that is possible.

Peter Alexander on his sister, who is losing both her sight and hearing

Danny, Weehawken, NJ — Fri, 20 Mar 2009 12:27:57 GMT

Dear Alexander's,
I was inspired by your story. My brother passed away almost five years ago from Crohn's Disease (unrelated to your disorder)and I miss his laugh and pushy big brother attitude! I loved watching the way you two care about each other. Keep your bond strong, as it appears you will, and cherish every moment. I wish I had Rebecca's outlook on life. Keep fighting the good fight!!! And remember, anything can happen!!! Even a cure! Thanks for the lift!

Peter Alexander on his sister, who is losing both her sight and hearing

Lee A Rahman, CMT, Warren, PA 16365 — Fri, 20 Mar 2009 12:28:18 GMT

Rebecca and Peter: Firstly your closeness makes me miss my big brother back in Malaysia. Secondly, I was wondering if you would consider visiting a traditional practitioner such as a certified and registered acupuncturist if you haven't done so. A practitioner who is an expert in Trigger Point Therapy is worth trying as well. I am not yet an expert but I do know TPT helps alleviate certain health conditions. Best of luck and a big hug from me to you both. Lee A Rahman, CMT

Peter Alexander on his sister, who is losing both her sight and hearing

Cindy Clark, Auburn, NY — Fri, 20 Mar 2009 12:29:03 GMT

My 10 year old son gets tested for Ushers, he has hearing loss and his vision is now slightly impaired. To date the Ushers tests have been negative but you mentioned a gene that is connected to the cause of this disease. I found that very interesting, he has had a lot of genetic testing and no one mentioned this. This gives me another avenue to look at. Thank you and God Bless and I too hope they find a cure.

Peter Alexander on his sister, who is losing both her sight and hearing

Gina R., Hicksville, NY — Fri, 20 Mar 2009 12:29:24 GMT

You are truly an inspiration to us all. We should all be so strong. Keep up the positive attitude...it certainly makes a difference. I will keep you in my thoughts and pray for a cure soon.

Peter Alexander on his sister, who is losing both her sight and hearing

Barb Shea Pote — Fri, 20 Mar 2009 12:29:35 GMT

My husband is also going blind. He was diagnosed with fundus flavimaculatus more than ten years ago. He has been declared legally blind by the Michigan Commission for the Blind although he still has vision, obviously it is limited. I think one of the things that makes me the most sad for him - outside of the obvious loss of his vision - he can't go to Peru or take off and travel before he completely looses his sight because we have three daughters, two college age and one in middle school. We can't sell our house to allow him the freedom from responsibility he deserves - you did see we were in Michigan, right? We are squeezing in Disney World, which he LOVES - so, that's good.
Thank you for sharing your story.

Peter Alexander on his sister, who is losing both her sight and hearing

Paula Castro, Wellington, Fl. — Fri, 20 Mar 2009 12:31:04 GMT

Rebecca, Thank you for sharing your story with us. You are amazing woman and an inspiration to us that take our sight and hearing for granted. Peter is lucky to have a sister as wonderful as you!!

Peter Alexander on his sister, who is losing both her sight and hearing

Pat Clark, Ypsilanti Michigan — Fri, 20 Mar 2009 12:31:04 GMT

Rebecca, I noticed that you have a Bernese Mountain Dog with you. He/she will be one of your best friends through all of this. They accept you and all your ups and downs with a grace that is astounding.

(As a BMD owner may I invite you to take a peek at the web site on yahoo groups Berner-l ?)

May God give you the strength to continue in your fight for sight and hearing. You are an inspiration.

Peter Alexander on his sister, who is losing both her sight and hearing

Joan Lynch — Fri, 20 Mar 2009 12:31:20 GMT

Rebecca, It's people like you who give the rest of us such strength for all the really challenging things we may face in life. I salute your courage!
Also so nice to see the human side of a professional reporter...he has a gift of keeping stories so real, and this personal one only makes me respect him even more!

Peter Alexander on his sister, who is losing both her sight and hearing

Sandra Levy, Ashland, Ma — Fri, 20 Mar 2009 12:31:27 GMT

Well, I've been inspired before, but my dear you are the tops. I believe a cure will be found and you will be good as new. You are a vibrant beautiful girl and if it would work I would give you an eye. Stem cell research will be there for you, that's a promise. Stay strong and live your life, you have an incredible strength that not to many people have.
I will pray for you everyday.

Peter Alexander on his sister, who is losing both her sight and hearing

Ted Nicholas, Beaver Island, Michigan — Fri, 20 Mar 2009 12:32:55 GMT

I also have retinitis pigmentosa. I have less than 5% of my vision now. My current battle is lighting, not only because it affects what I can see, but bright lighting has become very painful as well. I struggle with sunlight, office lights, even a normal 40 watt bulb seems like a flood light to me.
But I thank God every day for my talents and the people who love me and stand by me! I have become an accomplished artist, writer, musician and computer guru. I can identify with your drive to experience life. Don't ever stop!
Thank you for sharing your story. You are very brave.

Peter Alexander on his sister, who is losing both her sight and hearing

c.w. — Fri, 20 Mar 2009 12:33:18 GMT

How can I contact Rebecca and Peter ?

Peter Alexander on his sister, who is losing both her sight and hearing

Donna Webb — Fri, 20 Mar 2009 12:33:19 GMT

Your story really caught my attention. You are a beautiful, strong lady and your story will remain in my heart forever. After watching the story on Today Show, I jumped up and clicked on your story. It really touched my heart and has given me inspiration to continue to enjoy my sons and grandchildren moment by moment while I am able.

Peter Alexander on his sister, who is losing both her sight and hearing

sharon Tester — Fri, 20 Mar 2009 12:33:26 GMT

Hi, my name is Sharon and I have MS and one of the first things to go is the vision. In my research I came across an herb from the rain forest, it's a fern....I ordered it and with in one month my vision improved.....my night time driving definately improved,,,,,today I no longer wear glasses. Another thing for the eyes is grapeseed extract,,,,,,,,,,,,,,,it's worth the try....pls do! Good Luck!!! Sharon

Peter Alexander on his sister, who is losing both her sight and hearing

Judi Stern, New York, NY — Fri, 20 Mar 2009 12:35:05 GMT

You are an inspiration and the consumate spokesperson for those of us who do not let our disabilities define us. I was diagnosed with macular degneration in my mid-thirties and have been "legally blind" since then. Yet, I live a full and productive life, doing the things I love to do personally and professionally. It is obvious that the deep love of your family and friends (like mine) are the most important things in your life. May your courage and strength be your constant companions during your life's journey.

Peter Alexander on his sister, who is losing both her sight and hearing

Tammy Boywitt — Fri, 20 Mar 2009 12:35:06 GMT

wow, I watched you today and started crying, how we take advantage of our sight and hearing, I am worried about losing 30 pounds and you won't be able to see or hear in the coming years. I really got inspired by your desire to live thru anything. I wish you all the best and hope that this country will find a cure for this horrible condition before it totally hits you completely.

Peter Alexander on his sister, who is losing both her sight and hearing

vanessa harris,phila,pa. — Fri, 20 Mar 2009 12:35:22 GMT

rebecca, i just watched the today show and heard your story. i came right to the computer to hear it again. god bless you and your family,you will be ok because you are a child of god. blessings, mrs.harris.

Peter Alexander on his sister, who is losing both her sight and hearing

Dianna Kimball Arundel, Maine — Fri, 20 Mar 2009 12:36:03 GMT

I am truly inspired by you and you have my prayers. In this world of self centered people, it is truly wonderful to see someone so inspiring. Thank you for making us take a look at what is really important in life. You made my day with your story.Thank you.

Peter Alexander on his sister, who is losing both her sight and hearing

Raymond kekacs Southington ct — Fri, 20 Mar 2009 12:36:22 GMT

Rebbecca God bless you for your strength.I suffer form Myofibular myopathy it is a muscle wasting disease no cure or treatment I will lose most of my muscle use but you have to just keep your chin up.

Peter Alexander on his sister, who is losing both her sight and hearing

Barbara Siegel, Stowe, VT — Fri, 20 Mar 2009 12:37:55 GMT

Wonderful story. Rebecca is an inspiration. I sent a link to my daughter, who has a bilateral severe to profound sensorineural hearing loss. My question is, why not caption the video for the hearing impaired?

Peter Alexander on his sister, who is losing both her sight and hearing

Rosemary Johnson-Dean — Fri, 20 Mar 2009 12:38:07 GMT

Rebecca - you and your brother affected my day and perhaps even my life today - thank you very much. I watched my beloved father who had endured hemophilia all of his life die slowly from supranuclear palsy (same as actor Dudley Moore). Since his death almost 15 years ago I realized today that bitterness about his suffering had been my constant companion. Remembering his bravery and watching yours show itself so clearly has made me realize that I have no right to be so selfish in my grief and it's about time I got up off my self-pity and did something for someone else. I don't know what I will choose to participate in but you may be sure that along with the prayers I say each day for my father you and Peter and the rest of your family will be included. Thank you again.

Peter Alexander on his sister, who is losing both her sight and hearing

Jerianne Warren, Harvard, Ma. — Fri, 20 Mar 2009 12:39:12 GMT

You have met a greatest fear with acceptance and enthusiasm. You are a stunning example to those who face life's obstacles. Thank you for pulling those who are frightened into the world full of wonders you will always see.

Peter Alexander on his sister, who is losing both her sight and hearing

Judy, Indiaana — Fri, 20 Mar 2009 12:39:26 GMT

May God Bless you. You are truly an inspiration. I pray for a miracle in your life.

Peter Alexander on his sister, who is losing both her sight and hearing

Marcy Ragucci, Tewksbury,MA — Fri, 20 Mar 2009 12:39:46 GMT

Peter & Rebecca,
Thanks so much for sharing your story with us. You have offered many opportunities to viewers -- among those, a chance to make donations to find a cure for this cruel illness and an opportunity to stop feeling sorry for yourself (for whatever reason) and get out there and live your life to the fullest.
Rebecca, you bring a message of hope and courage to so many people out there.
Peter, thank you for sharing the story of your amazing sister with us. I will eagerly await a follow-up story somewhere down the line with hopeful news of treatment and cure for Rebecca's illness.
Bless you both, our prayers are with you!

Peter Alexander on his sister, who is losing both her sight and hearing

Tony, New Bedford Ma. — Fri, 20 Mar 2009 12:39:51 GMT

I thank you for you and your sister! "Smile"
"Family" - I will keep you both in my hearts mind.
"Prayers"

Peter Alexander on his sister, who is losing both her sight and hearing

Ryan, Miami Beach, FL — Fri, 20 Mar 2009 12:41:35 GMT

Your a beautiful person, inside and out. I smile at the motivation you have to live life. Although I have my hearing and my sight, you have inspired me to choose to learn sign language so I will always be able to communicate with amazing people like you.

Peter Alexander on his sister, who is losing both her sight and hearing

Julie Wilkes, Columbus, Oh — Fri, 20 Mar 2009 12:45:21 GMT

Thank you for sharing your story and for your strength and positivity. I found a lot of similarities to your story. I teach fitness classes, work a full time job and had been diagnosed with a terminal heart condition that was to take my life by 12. At 33, I am living fully and happy and overcame what doctors didn't think could be overcome.
I share that to tell you to keep on living fully - miracles do happen. And, if you do lose your vision and hearing completely, you'll have an unbelieveable amount of love and support out there - accepting you and believing in you as you are... For those guys that stopped dating you - they are hardly good enough people for you to even be concerned with. You are a beautiful person, on the inside and out!

Peter Alexander on his sister, who is losing both her sight and hearing

Kathleen Kennedy Cohoes, NY — Fri, 20 Mar 2009 12:48:57 GMT

Rebecca & Peter,
I was getting ready to start my day when your interview come on the Today show and I stopped in my tracks to listen to every thing that both of you had to say. Rebecca you remind me so much of my mother. At infancy she went deaf due to childhood illnesses but did not know it till she was a toddler, and then as she got older she was diagnosed with RP. The last 15 to 20 years we had to do sign language in her hand just like Helen Keller. She too had a wonderful outlook on life and everyday she had a smile on her face and never let life get her down. Family is a huge factor in this whole thing. I hope they find a cure very soon for you, and everyone else that suffers from a disease like that, especially when it effects the eyes.

Peter Alexander on his sister, who is losing both her sight and hearing

Valerie, Maryland — Fri, 20 Mar 2009 12:53:48 GMT

I work in the Deaf community in Maryland. One of the best speakers I've ever heard was a man in his 70's that has Ushers. He prepared himself for every phase of Ushers by learning American Sign Language, tactial sign and then braille. He either created or discovered systems of labeling credit cards, money and photos. He takes advantage of a variety of organizations that allow him to remain independent and involved in his community. While Ms. Alexander looks for cures I hope she and her family pursue communication options now to prevent isolation. I wish her a very happy and fulfilling future!

Peter Alexander on his sister, who is losing both her sight and hearing

Valan Martini — Fri, 20 Mar 2009 12:54:33 GMT

Rebeccah, you are a model of You are an amazing and wonderful woman, and you have much living to do yet. Your determination is truly an inspiration. You are an elegant, bright, beautiful woman with much to offer. You obviously know it and stay active physically and mentally. This day alone, millions have been encouraged by your example, and reminded that we should never take our opportunities for granted. Had never heard of the syndrome before now. This cruel disease will not exist always. Hope you might correspond, encouraging news for you. Appreciated the segment very much. Really appreciated your Brother's reference to you, "my best friend". Says a lot. Henry Ford was once asked who his best friend was. After pausing to think, he replied: "My best friend....is the person who brings out the best in me". Seemed that this applys both ways in your case.

Peter Alexander on his sister, who is losing both her sight and hearing

Wishing you the best, Connecticut — Fri, 20 Mar 2009 12:56:18 GMT

Your story really touched me and I felt the need to offer this, you of course can take it or leave it as you wish: I had a family friend who's vision improved after chiropractic (no it never returned to what it had been unfortunately) and it helped her for a long time.

Peter Alexander on his sister, who is losing both her sight and hearing

Marta Stepanowicz, Boynton Beach, FL — Fri, 20 Mar 2009 13:00:08 GMT

Rebecca, thank you for sharing your story with all of us. Your inner strength and determination is an inspiration to all of us.

Peter Alexander on his sister, who is losing both her sight and hearing

Billy Donovan, New York NY — Fri, 20 Mar 2009 13:04:59 GMT

Saw you on the Today Show this morning and could not have been more impressed. Expect a flood of marriage proposals!(If I were not married, mine would be the first)

All the very best, and God bless.

Peter Alexander on his sister, who is losing both her sight and hearing

Robert Megill, Glenolen, PA — Fri, 20 Mar 2009 13:07:51 GMT

Hi Rebecca,
I am losing my sight also.
I have RP.
I would like to chat from time to time.
I do not know if you will read this or not.
You said reach out.
my email rjmegill@verizon.net

My Best to you,
Bob Megill

Peter Alexander on his sister, who is losing both her sight and hearing

Dennis Lysy, Hilton New York — Fri, 20 Mar 2009 13:10:54 GMT

Rebeccah,I noticed a puppy in your life. Don't know if it's yours or a friends. I don't know if you've thought of requesting a guide dog.I was a puppy raiser for Guiding Eyes fo the Blind in upstate New York,not far from New York city. Guide Dogs are available at no cost and some are even trained to be both sight and hearing companions. If you and your brother are interested in knowing more the school,it is located in Yorktown Heights N.Y. There web site is http://volunteer.guidingeyes.org/ Guides are trained to get along with your family dogs. I'll be praying for you and your family. Peace be with you, Dennis

Peter Alexander on his sister, who is losing both her sight and hearing

Maria Battat — Fri, 20 Mar 2009 13:12:48 GMT

Hi Rebecca,
You touched me so much. My father is legally blind and I know how difficult is to try to find something that could help. If you have a chance please contact Mr. David Webber (GCFP), the Feldenkrais Institute in New York phone# 212-727-1014, fax # (212) 727-2787.
Mr. David Webber (GCFP) lost his eyesight suddenly in 1996, at the age of 43, due to a severe eye condition (uveitis), and was declared legally blind. Remarkably, he regained much of his vision by working with the practical principles of The Feldenkrais Method. Based on his own healing experience, he has been teaching Seeing Clearly (c) workshops worldwide, including presenting at the North American Conference on Natural Vision Improvement (2004), the 20th International Conference on Holistic Vision (Italy, 2005), and the 21st International Conference on Holistic Vision (Munich, 2007). With Carl Ginsburg, PhD., Feldenkrais Method Trainer, he has taught both public workshops and advanced trainings for Feldenkrais Practitioners
It look like an AD but it isn't. My experience with Feldenkrais method was so intense that I started trainning - I am now on the second year. If you want to speak about please contact me. I hope so much that you find something that help you!

Peter Alexander on his sister, who is losing both her sight and hearing

Rachel M. Binegar — Fri, 20 Mar 2009 13:13:27 GMT

Has your sister been tested for biotinidace defficiency? Our grandsons were tested and told if they had this they would eventually loose their sight and hearing when in their late twenties. It is often not diagnosed in time. Once diagnosed the effects can be stopped. Thought it was woth mentioning to you.

Peter Alexander on his sister, who is losing both her sight and hearing

Rich, Tuxedo Park, NY — Fri, 20 Mar 2009 13:20:20 GMT

Rebecca: Hey, I just wanted to let you know that you are one of the best--and most energetic--spinning instructors I've ever had the chance of riding with. Keep up the great work! Hope to see you in the gym again someday soon.
Rich

Peter Alexander on his sister, who is losing both her sight and hearing

Tracy Thompson Sharon Pennsyvania — Fri, 20 Mar 2009 13:20:49 GMT

My eyes havent stop watering. You are a beautiful young woman and you are in my prayers.

Peter Alexander on his sister, who is losing both her sight and hearing

Terri, Farmingdale, NY — Fri, 20 Mar 2009 13:25:32 GMT

What an inspriration to all of us that are living with a degenerative illness. I will certainly think of you the next time I begin to feel sorry for myself. Life really is too short and we must live every day to the fullist while we are able to do so.
God Bless you and your beautiful and supportive family!

Peter Alexander on his sister, who is losing both her sight and hearing

David, Houston, TX — Fri, 20 Mar 2009 13:25:43 GMT

Rebecca, you are an astonishing person. I was very moved by your story. Peter is a terrific brother, whose love and support is heartwarming.

The first thing that came to mind after watching the story, I wondered if something like a cochlear implant would give some of the hearing back to Rebecca?

Good luck to you, Rebecca. You truly are inspiring.

Peter Alexander on his sister, who is losing both her sight and hearing

Mike, Minneapolis, Minnesota — Fri, 20 Mar 2009 13:26:43 GMT

Rebecca, what an inspiration you are...Just your attitude and joyful spirit is amazing...Have you ever thought of writing your memoir of this experience? I think that would be a gift to all of us; I am very moved by your story.

Peter Alexander on his sister, who is losing both her sight and hearing

Lisa Fresina, Denham Springs, Louisiana — Fri, 20 Mar 2009 13:27:13 GMT

Hi my name is Lisa I am 46 years old. I am married and have 2 children. I found out when I was about 13 that my eyesight was going bad. They did not tell me why, the doctors just said by the time you are 34 or so you will not have much vision that will be functional left. Well here i am at 46 and what they said back then is true. I go to doctor after doctor hoping for some kind of miracle but alas nothing, they always come up with some different things. So here I am with the vision that God has blessed me with, it is what it is. I am so proud of you the way you handle things. My oldest daughter has had eye surgery and has very bad vision in one eye and pretty good in the other, I raised her to think on her own and she can do what ever she sets her mind to, She is in college to become a teacher. I am glad to see you are not letting this stop you. Life is so full for you. May God bless you and you are in my prayers.

Peter Alexander on his sister, who is losing both her sight and hearing

Erica Hausfeld — Fri, 20 Mar 2009 13:28:49 GMT

Becky! I was so excited when I turned on the Today show this morning and saw a familiar face. I was with you and your Mom in Peru and I have to say that I often think of you...your courage, your strength and the way you take on all challenges (even the Inca Trail). Outstanding! You are an inspiration. Take Care! (P.S. your Pup is So Cute)

Peter Alexander on his sister, who is losing both her sight and hearing

Susie, Albany NY — Fri, 20 Mar 2009 13:28:59 GMT

Rebecca, you are very brave. I worked in a doctor's office where we had a patient in her 80's who suffered with Usher's disease. She had been blind and deaf for many years. Unbelievably, she had a cochlear implant which gave her back her hearing. Hopefully, something can be done to save your eyes.

Peter Alexander on his sister, who is losing both her sight and hearing

Alan Morton Grove IL — Fri, 20 Mar 2009 13:30:10 GMT

Thank you for sharing your story.

Peter Alexander on his sister, who is losing both her sight and hearing

Gary O. — Fri, 20 Mar 2009 13:30:52 GMT

I was just watching your story with my 7-year-old daughter. Ellie (who loves dogs and has a special needs twin brother who is legally blind among other things) was emphatic that you needed a service dog. I agree that a seeing/hearing trained dog would be a great help. A dog could even start helping you now and help you through the transition, while providing you with so much more freedom.

If you get a chance, you should also visit the model apartment at the American Foundation for the Blind (http://www.afb.org/) located in Dallas. You can read more about it at: http://www.accessible-devices.com/ModelHome.html.

Thanks for your story of hope.

Peter Alexander on his sister, who is losing both her sight and hearing

Angela Taylor — Fri, 20 Mar 2009 13:35:42 GMT

We found out that my son was born blind in his left eye five years ago, and I was very hurt because at birth we did not know the doctors did not say anything.So the school nurse was doing eye test and she told me to take him to my eye doctor, the doctor told me my was blind in one eye, this was at the age of 10 years. I was so unhappy. They gave us a patch to to put over the bad eye. He seems to get head-ache when he reads for a long time. Can someone help me if there is some info that will help my son. Thank you

Peter Alexander on his sister, who is losing both her sight and hearing

PAM RAINEY, ANDERSON, SOUTH CAROLINA — Fri, 20 Mar 2009 13:38:27 GMT

MY DAUGHTER WAS BORN DEAF AND WAS TOLD THAT SHE HAD USHE'S 8 YEARS AGO. SHE IS NOW 27 YEARS OLD AND IT IS HARD FOR HER AT TIMES. SHE IS STILL DRIVING BUT DOES ALOT OF THINGS IN THE DARK. LIGHT REALLY SEEMS TO BOTHER HER. SHE IS ALOT LIKE YOU, HER HEARING WAS NOT BAD BECAUSE SHE USES SIGNS BUT HER EYES SHOW HER THE WORLD. I WANT HER TO SEE THINGS BUT WE ARE NOT ABLE TO DO ALOT BECAUSE I AM ALSO DIABLED. THE MONEY IS JUST NOT THERE. I FINALLY GOT INTO A HOME SO SHE CAN HET USE TO THE SURROUNDINGS. SHE STAYS HOME ALOT AND HAS HER THREE DOGS AND ME. BUT SHE HAS A GREAT BIG SMILE AND LOVES EVERYONE. SHE WAS MY SPECIAL GIFT FROM GOD. THANK YOU SO MUCH FOR SHARING YOU STORY AND I KNOW ONE DAY THEY WILL FIND A CURE. GOD BLESS YOU AND YOUR FAMILY. THANK YOU

Peter Alexander on his sister, who is losing both her sight and hearing

Michelle Gamble, Duluth, MN — Fri, 20 Mar 2009 13:39:48 GMT

Rebecca,

Your story was so touching this morning. I want to tell you to never let the rejections from men stop you. It only means that they are not the one for you. I am a 38 yr old woman who is married to a man with RP. He struggles very much with not being able to see well. I love him with all of my heart and stand right beside him through everything. I knew about his vision problems right from the beginning; in fact he was legally blind already when we met. He has been a wonderful step father to my 2 older children and we now have a 2 yr old daughter together. He is also a lot like what you seem to be...he does not let this disease get him down. I think you are a very strong, courageous and beautiful woman. We do have the fear that this may be passed down to our 2 yr old daughter but we have decided if that be the case we will show her that she can do anything she sets her mind to. My husband does everything the rest of us do except drive of course. I am going to show him your story this evening. Thank you and your family for sharing this.

Peter Alexander on his sister, who is losing both her sight and hearing

KP, TX — Fri, 20 Mar 2009 13:44:45 GMT

Thank you so much for telling your story. When you said at the end that the thing you would remind people being diaognosed with this disease is that they are not alone you touched a chord in my heart and brought many tears to my eyes. I was born profoundly deaf but have always been successful in spite of it and lived my life completely mainstreamed and happy with who I was -- until I was 37 and diagnosed with Usher Type 1 and told I was going blind. That was 4 years ago and my vision has gotten progressively worse. It completely changed me - I suffer from depression and have not been able to "snap out of it." I am so afraid. I don't want to learn sign language. I don't want to learn braille. I don't want to lose my ability to lipread and my ability to communicate with my little girls and my husband. I feel very, very sorry for myself! LOL. Anyway, Rebecca, you inspired me today! Your attitude is amazing - I want it. I will have it. Thank you very very much.

Peter Alexander on his sister, who is losing both her sight and hearing

TS from Texas — Fri, 20 Mar 2009 13:44:58 GMT

Hi Rebecca. I just saw your story on The Today Show, and I was deeply touched! You are so courageous!Living life to the fullest! I am an sign language interpreter and know people personally who have Ushers Syndrome. They are very successful and independent in the world, despite their disability. I believe you too will be the same way. I would recommend maybe you and your family taking sign language classes, this could greatly help you and your family to communicate with each other, once the Ushers Syndrome takes it's full course. I would even look into some of the schools for the Deaf and Blind. They often provide lots of information, and services that may become useful to you in the future. You are an inspiration, keep living life to the fullest.
God Bless

Peter Alexander on his sister, who is losing both her sight and hearing

Jalene Woods, Meriden, Iows — Fri, 20 Mar 2009 13:45:23 GMT

I was just watching your story and my heart goes out to you and your family. My older sister has a 6 yr old son who they first thought this is what he had at age 4, but since then they now believe he has Retinitis Pigmentosa or RP. This month he is being fitted for a walking cane. I hope you know how many people love and support you and those suffering along with you. God bless!

Peter Alexander on his sister, who is losing both her sight and hearing

Dan Corso, Caleral, Ala. — Fri, 20 Mar 2009 13:46:19 GMT

Pete and Becky, you folks are, what I call, the "BOLD AND BRAVE" of this world, and I can't imagine "going" to where you are "on the road" in this life. BECKY, you are tremendously blessed for your outlook on life, and willing to accept what God has placed before you, I am amazed! Your love of life and family, will be rewarded.
Pete, you and Becky, MUST have a wonderful family, because of your love for each other, I wanted to "reach out and touch the tv." when I saw your story. I will pray for you and your family.
thank you for bein' so strong and teaching life's lessons, and the way "we" all need to be more like.

Peter Alexander on his sister, who is losing both her sight and hearing

Terry Kurth Pasadena,Maryland — Fri, 20 Mar 2009 13:48:35 GMT

Hi I too suffer from degenerative eye problems has to do with Rods and ones. My two children are hard of hearing and attend a deaf school. So know about loss of hearing and vision. You mentioned about feeling alone and knowing that your not. It was wonderful to see such a beautful on the inside ann out speakiing out on all of our behalf. I have had to learn to lol about many things that have to deal with my families disabilities. I would love to have people who understand what we go through on a daily bases to talk to. Thank you for sharing you made my day!

Peter Alexander on his sister, who is losing both her sight and hearing

Tabitha, Austin, TX — Fri, 20 Mar 2009 13:49:38 GMT

Rebecca - just wondering if you have seen an upper cervical doctor. I highly recommend Dr. Forest in Alameda, CA 510-522-1818. If you give him a call and explain your situation, he may be able to share some information or advice. Also, he may be able to find a referral closer to you.

Peter Alexander on his sister, who is losing both her sight and hearing

Betty Barrett, San Antonio, TX — Fri, 20 Mar 2009 13:56:52 GMT

Thank You for sharing your story with us. My husband has RP. I worry about my children. Seeing a strong woman like Rebecca gives me hope that if my kids get RP they can still have a fulfilling life. My husband now has a guide dog named Cooper. Cooper has given him back his mobility. I hope Rebecca will some day have a special dog to help her continue to live an active life. Guide Dogs of Texas provided Cooper.

Peter Alexander on his sister, who is losing both her sight and hearing

Kelly, Bettendorf, Iowa — Fri, 20 Mar 2009 14:01:50 GMT

Thank you so much for sharing your story. I can't wait to share with my son who, just over a year ago (prior to turning 19 yrs old) starting losing his central vision, and within a month's time had virtually no central vision in both eyes. He sees only a kaleidoskope of color with only peripheral site. He was diagnosed, with also very rare, Leber's Hereditary Optic Neuropathy. I believe that he, like Rebecca, is remarkable and an inspiration to those around him. His family, like Peter (and I am sure the rest of the Alexander family), just want to make it better! We pray, we believe in miracles, and regardless, we know that God has a special plan for their lives. Thank you again for sharing.

Peter Alexander on his sister, who is losing both her sight and hearing

Steve, Hampshire, Il. — Fri, 20 Mar 2009 14:08:43 GMT

We just found out our 20 year old son has RP. He has congenital hearing loss of about 65% and worn hearing aids since he was 3. It's still being determined if he has Ushers or RP with hearing loss (as hearing has been stable). Thanks for sharing your story- as a parent who would trade places a million times over, appreciate you helping to bring this disease, its trials with continued hope and zeal for life to the main-stream (our prayer and desire for our son, in addition to a cure, of course).

Peter Alexander on his sister, who is losing both her sight and hearing

Daryl Clark — Fri, 20 Mar 2009 14:17:43 GMT

One of my dearest friends has Usher's and has been deaf since 2 and blind somewhere in her 20's. She does everything! She is a gourmet cook, she teaches indepedant living classes and travels to places I wouldn't. She also conducts Bible studies with people to share her hope for a time when the Bible prophecy at Isaiah 33:24 will be fulfilled, "no resident will say, " I am sick."

Peter Alexander on his sister, who is losing both her sight and hearing

Meredith Casper, wy — Fri, 20 Mar 2009 14:17:59 GMT

When listening to Rebbecca's story I heard that there is a lot that she wanted to do. The Today show should let her travel with Matt L. for the Where in the World segment. People might connect.

Peter Alexander on his sister, who is losing both her sight and hearing

Carol Caruthers, Atco, NJ — Fri, 20 Mar 2009 14:23:43 GMT

Dear Rebecca,

You are a beautiful and incredibly courageous woman. I wish you all the very best and I promise you that I will keep you and your loved ones in my prayers every day.

Your life story is remarkably similar to the life of Helen Keller - who was born deaf and blind. But you have had so many good years of hearing and sight. Miss Keller once called her loss of hearing to be 'isolating.' (Her word.) I pray more than ever that you reach out to the good people around you - like your brother Peter whom I've watched through the television over the years at NBC News - and the rest of your family, as well as all the friends and the people so near and dear to you in your life that you may not be able to count them all.

Good luck!

And May the Good and All-Powerful Lord Bless You!!!

Pray for a miracle and I assure you of my prayers for this, as well.

Most sincerely,

Carol Caruthers
Atco, NJ

Peter Alexander on his sister, who is losing both her sight and hearing

CEE_CEE----Lebanon, PA — Fri, 20 Mar 2009 14:24:04 GMT

Wow here I am complaining about my life, and then I come across you, beautiful, smart young lady who has taken the cards you have been dealt and ran with it. I pray that a cure developes for you and You will stay in my mind and heart with each day that goes by. Life is what we make of it and you my dear are a STRONG lady who will find her way thru this world and your prince is awaitting pray and KEEP your Faith Strong.....You are here on earth for a reason.
GOD BLESS YOU!!!!!!

Peter Alexander on his sister, who is losing both her sight and hearing

Tammy. R Riverside ,R.I. — Fri, 20 Mar 2009 14:24:58 GMT

Hi, Rebecca let me just say you are a beautiful woman with a kind soul.Shame on the ex's who decided they didn't want to be a part of your life due to your disabilities and the people who walked away from you at the bar.To me it seems like your better off anyway and they will definately regret it in the world as they know it. Just when i feel like my life is difficult and im stressed out beyond my control,a remarkable woman like you comes along with a sad story,but you just shine like the sun.Now I feel really silly about my small everyday stresses. Thank you for sharing your story.Your in my prayers .God Bless You Rebecca.

Peter Alexander on his sister, who is losing both her sight and hearing

Richard Friedman — Fri, 20 Mar 2009 14:26:05 GMT

You are a true survivor. "Be Here Now" was an anthem of the 60's and you reaffirm that axom. I hope that a cure can be found for you and all the others who suffer your disease. I am inspired by your spirit and know that you will continue to meet people who will love and respect you.

Peter Alexander on his sister, who is losing both her sight and hearing

Heather Collins, SLC, UT — Fri, 20 Mar 2009 14:27:32 GMT

I work for a school for the deaf and the blind and love when I hear and see inspirational adults living and flourishing with hearing and vision impairment. It offers encouragement and a hero my kids can aspire to be. It helps my kids adjust their attitudes towards their disabilities and see they too can do it.

Peter Alexander on his sister, who is losing both her sight and hearing

Greg M. Baton Rouge, la. — Fri, 20 Mar 2009 14:30:03 GMT

My best friend has Ushers syndrome as well as her younger sister. She is 47 and her vision is down to about 30%. She, like you, has a zest for life, and has been there for me in good times and bad. The best way both of you attack this disease is by the truely priceless smiles on your faces.

Peter Alexander on his sister, who is losing both her sight and hearing

Russell Bratka, Tucson, AZ — Fri, 20 Mar 2009 15:27:55 GMT

I saw this and agree with everyone that you are an inpiration. I was born with a heart problem and recieved a new heart 15 months ago and feel like a complete different person I can do more than ever and I have always felt like I was on borrowed time and still feel that way my wife and friends don't understand why but I feel like if they were dealt a hand like this they would. I love that you live your life like that and I hope you get to continue to do everything you have ever dreamed.

Peter Alexander on his sister, who is losing both her sight and hearing

Richard W. Milwaukee, WI — Fri, 20 Mar 2009 15:27:55 GMT

Rebecca and Peter, I saw your segment on the Today show and I was blown away. I have always admired Peter's professionalism and class whenever I have seen him on NBC news, but whenever we get to see a more "human" side to a face on tv, it is like you can see them more for the "real" person they are.
Rebecca, you are such an inspiration to everyone you must meet, it it awe inspiring. You give off such beauty, both outside and especially inside with your courage and strength. God bless you both and your family and please keep us posted on your progress...

Peter Alexander on his sister, who is losing both her sight and hearing

Tara, Salt Lake City, Utah — Fri, 20 Mar 2009 15:28:16 GMT

Rebecca, your story has inspired me a great deal to live each day in the moment. You are such a strong and beautiful woman! Thank you for spreading awareness on this disease. I am confident a cure will be found in time. Thank you for sharing your story and reminding me that everyday is a gift. You will forever be in my thoughts and prayers!

Peter Alexander on his sister, who is losing both her sight and hearing

Kathy, Dallas, Texas — Fri, 20 Mar 2009 15:30:28 GMT

God is still in the healing process...no matter the situation. God Bless You...

Peter Alexander on his sister, who is losing both her sight and hearing

Rache Pierce, Gaithersburg, Maryland — Fri, 20 Mar 2009 15:31:12 GMT

WOW Rebecca! What a wonderful inspiration you are for us all! I was so moved by your determination and energy and sheer will to live every moment to the fullest. Watching your story this morning made my day and I want to thank you for your courage and willingness to share your struggles with others so that we can be spurred on to greater things!!

Peter Alexander on his sister, who is losing both her sight and hearing

jc, bossier, LA — Fri, 20 Mar 2009 15:34:39 GMT

Rebecca, What a powerful story and testimony your life is. I have a progressive hearing loss that has already left me 90% deaf in both ears. I know how very isolating and sometimes frightening the loss of hearing can be. My eyes-though they are pretty bad too-are my salvation. I cannot imagine not having them to help guide my through situations. My prayers are with you that they will find something-ANYTHING-to at least slow this disease down for you. May God continue to grant you the grace and strength you are showing in this difficult time.

Peter Alexander on his sister, who is losing both her sight and hearing

Roxanne Knight, Green Bay, WI — Fri, 20 Mar 2009 15:34:58 GMT

Thank you for sharing with such candor and educating me on a disease I knew nothing about. You are truly an inspiration and I will pray that a cure is soon found.

God Bless.

Peter Alexander on his sister, who is losing both her sight and hearing

Maria Willey, Noblesville, IN — Fri, 20 Mar 2009 15:36:25 GMT

My 19 year old son was recently diagonised with Ushers type II. He has had a hearing loss since birth, but we had never heard of Ushers and he was only just tested within the past year. He has lost some sight which explains the last few years of him walking into things and tripping alot. I greatly appreciate that you have been able to help bring Ushers to the public view. Since it is so rare, nobody knows about it. We would be interested in any studies that are currently going on but finding the information is difficult and finding a doctor that knows anything about Ushers has proven difficult,we are still searching. Thank you for making your situation public.

Peter Alexander on his sister, who is losing both her sight and hearing

Cindy — Fri, 20 Mar 2009 15:36:31 GMT

I too also have this condition and know that it take so much more effort to get through a normal day then most people realize. It is not visable to others and at times can be hazardous, such as walking into things and tripping over objects. Those who have this condition do have to overcome fear in order to live life to the fullest. Thank you for educating others.

Peter Alexander on his sister, who is losing both her sight and hearing

Jill Blackstone, Studio City CA — Fri, 20 Mar 2009 15:37:09 GMT

REACH OUT TO ME -- what a statement. Please read to the end of my paragraph because I have an idea. I'm still in bed, unable to leave my computer since watching your piece on Rebecca. My two younger sisters have retinitis pigmentosa and one also has Usher syndrome. She's 42 years old, lives with me and probably always will. I could write volumes about the toll this disease takes on its victims AND the families - how we adjust our homes and lives to accomodate their needs, how I explain to dates why my sister lives with me when she looks "normal" to them, how my Saturdays have to be about driving them around helping them get their errands done, the hours it can take to do a simple single errand like going to the drugstore or to buy a shirt, and the worries we have as we watch my other sister's 4 children grow up, wondering if they'll show symptoms. But the most important thing Rebecca said in today's piece was REACH OUT TO ME. My sister Wendy wears a button that says "I am legally blind and deaf" because people think she's clumsy, stupid, in a daze when she doesn't see or hear them. What a great slogan -- REACH OUT TO ME so I know you're there. Literally. A few years ago the Foundation Fighting Blindness did those plastic bracelets like Lance Armstrong's Live Free, it was clear and said "Our vision is clear" and benefited FFB research. It was great. How about a t-shirt campaign with the slogan REACH OUT TO ME SO I KNOW YOU'RE THERE? Let's make it happen!!!! I'll help!

Peter Alexander on his sister, who is losing both her sight and hearing

laura, alhambra, ca. — Fri, 20 Mar 2009 15:39:12 GMT

hi beckie, i watched you this morning and i want to share some one with you that i know could heal you completely. His name is Jesus. please don't stop reading this. whatever faith or religion you claim, He is here for everyone. i believe in miracles. last year He saved my life and i had no idea i was in danger. health wise. last month He healed me of a possible internal problem. i was very sick and i asked Jesus to heal me. i claimed it, even though i was in severe pain. when i went in for the test, an excruciating, painful test, the doctor found nothing. God healed me once more. i want you to know that you are loved by the most High and He has a great plan for you still. you are precious to Him. if you would just believe, do the unthinkable and have faith in something you can not understand, take that first step, i know, i believe whole-heartedly Jesus will heal you completely. what's it gonna hurt?i am sure you do not want to lose your sight and hearing, right? so i will claim along with you in prayer for a total healing. i trust our Precious Lord will restore you as you first were. He will do a mighty work and you will see how loving and gracious He is if you allow Him to do this for you. take that first step, what do you have to lose, but your sight and hearing, Right? i believe...give it to Him and see. your friend in Christ, laura

Peter Alexander on his sister, who is losing both her sight and hearing

Jeri Snipes, Las Vegas, Nevada — Fri, 20 Mar 2009 15:43:46 GMT

Rebecca, I too have Usher Syndrome. I haven't heard anyone talk about it. I had my cry this morning after hearing you on the Today Show. It does make you feel alone until you hear of others (no pun intended) with the same affliction. I too do my best to help others with hearing and vision problems as I have both. Live one day at a time and help and love everything and everyone you can. Stay strong and LIVE, LAUGH AND LOVE.

Peter Alexander on his sister, who is losing both her sight and hearing

Brenda Los Angeles, Ca — Fri, 20 Mar 2009 15:47:16 GMT

I was impresed by your amazing attitude you have and that willing to leave your life to the fullest,so please go to www.zrii.com and read about this and then contact me i beleive this will help. if it can help you in slowing the process it is already a good think, i'm not a doctor or a scientist but if there is something that I'm sure off is that it might help.

Peter Alexander on his sister, who is losing both her sight and hearing

Shawn Downs Wakefield MA — Fri, 20 Mar 2009 15:48:50 GMT

I feel for you, I wish there was a freedom from you pain. I have something that made me Blind in one eye and and slow in the uptake. And it only happened 2 years ago, when I was 27. And it is hard to adjust to that. I have never I this before, written on one of these before but yours, meant something to me.

Peter Alexander on his sister, who is losing both her sight and hearing

Jay W., Atlanta, GA — Fri, 20 Mar 2009 15:49:51 GMT

A truly inspiring story - its all about attitude. I am 44 and a strategy management conultant. I have progressive sensorineural hearing loss and am getting close to needing a cochlear implant. This has worked amazingly well for others in my family with this challenge. Keep up the positive attitude.

Peter Alexander on his sister, who is losing both her sight and hearing

Tiffinie Putman Belton SC — Fri, 20 Mar 2009 15:51:24 GMT

I would like to tell you that your story touched me today. I am fighting with a eye problem with my son. He has a problem that is called Aniridia. It is where he doesn't have the color in his eyes. When he was born the doctors told us that he was blind. He is now almost 3 years old. And he can see really good. But his eye doctors say it won't be for long. We take everyday like it's his last day to see. Thank you so much for going on there and letting people see that blindness isn't bad. Thank you.

Peter Alexander on his sister, who is losing both her sight and hearing

Tiffinie Putman Belton SC — Fri, 20 Mar 2009 15:52:29 GMT

Peter Alexander on his sister, who is losing both her sight and hearing

Gary James, Minneapolis, MN — Fri, 20 Mar 2009 15:58:39 GMT

Hi, my sister and I are affected by RP Syn. We both know what you are going thru. My sister was diag. 30 years ago and was told she would be blind in ten years. Although she and I have lost a substantial amount of eyesight and hearing, we have little left and do well in the public, who have no idea what's going on. I love your story about the tree branch. I have a tree in my back yard that I manage to hit with my forehead while mowing the lawn. I do this at least once or twice a year. Been doing this for fifteen years a still havn't learned my lesson. Appreciate you going on TV, the more exposure there is about this the better for us. Good Luck

Peter Alexander on his sister, who is losing both her sight and hearing

Sean OMalley, San Diego CA — Fri, 20 Mar 2009 16:05:03 GMT

Hi Rebecca,
I sent Peter an email a few minutes ago with more information but wanted to thank you for your inspiring presence and add to so many wonderful comments about your story.

Peter Alexander on his sister, who is losing both her sight and hearing

Kathie Mondovi Wisconsin — Fri, 20 Mar 2009 16:05:29 GMT

Your information has been wonderful. My sister in law is blind in one eye and only has very limited vision in the other. She has went deaf in one ear and in the past 2 weeks started rapidly losing hearing in the other ear. The doctors she has seen are saying it is because she has such a low heart rate. You have just opened a new chapter in her book. When she goes to the doctor this week, she will insist on more testing. Keep strong, you are a example for everyone of us.

Peter Alexander on his sister, who is losing both her sight and hearing

Nancee Carmody — Fri, 20 Mar 2009 16:09:26 GMT

Rebecca thank you so much! I have rp along with three of my sisters. You explained so perfectly how I feel, what I see and experience I have had. It is such a misunderstood vision problem. People dont understand how I can read and walk down the street but don’t see them standing next to me. I also don't want pity and have a list of to does! You are awesome girl. I put you on my face book and hope my family watches. Thank you!

Peter Alexander on his sister, who is losing both her sight and hearing

John Diles, Castro Valley, California — Fri, 20 Mar 2009 16:09:29 GMT

Hey Becky,

Great piece this morning on Today. You are bringing awareness of Usher's to so many. Please say hi to your folks for me. Mary is pg and would love to hear from you. No need to tell you to keep up the great work...everyone knows you will. Love,
John (your old hearing aid guy)

Peter Alexander on his sister, who is losing both her sight and hearing

Dawn P Washington Twp NJ — Fri, 20 Mar 2009 16:13:53 GMT

Rebecca how can I contact you? i have questions. My 13 year old son was diagnosed with RP two days ago and I feel so hopeless. Your story gives me strength and I thank you for that.

Peter Alexander on his sister, who is losing both her sight and hearing

Bev, Pompano Beach, Fl — Fri, 20 Mar 2009 16:14:58 GMT

Mostly I want to say ditto to all the comments, especially those who have admitted to being down
for very minor things compared to what you have faced all your life. I truly do feel that God put your story in my life today to make me appreciate my blessings. And as I can see by these comments you have touched so many. Keep smiling your beautiful smle and I too will pray for you.

Peter Alexander on his sister, who is losing both her sight and hearing

Leon, Lac du Flambeau, WI — Fri, 20 Mar 2009 16:20:39 GMT

Very inspiring story, truly a woman of courage. A keeper in my book and I hope she finds someone that really appreciate her for who she is. Thank you for being such a wonderful person. I hope science will advance enough someday to help you overcome your disabilities.

Peter Alexander on his sister, who is losing both her sight and hearing

Gero Meyersiek, East Greenwich, RI — Fri, 20 Mar 2009 16:22:24 GMT

Dear Rebecca, I commend your courage and your determination to carry on a normal life. I am sure that it will remain positive and wonderful! I was diagnosed with RP at age 19 and was told that I had five years of sight remaining and that learning Braille was the most sensible course of action. What terrible advice to give - and receive. Needless to say, I did the opposite: college, graduate school and a doctor's degree. However, unlike you, I hid my affliction for decades and covered it up with lots and lots of excuses. It was mind over matter nonsense. As a result, when I finally became legally blind, I was branded a fraud by my employer! People simply did not understand that someone can appear perfectly normal while struggling against impossible odds. My advice to everyone is to follow your example and not try to go it alone. There are many good people (and organizations) out there - and they will provide support and understanding.

Peter Alexander on his sister, who is losing both her sight and hearing

sandy Tremblay West Greenwich Rhode Island — Fri, 20 Mar 2009 16:22:46 GMT

Hi Rebecca, I saw your story on MSN.com today and was impress with your upbeat and humorous outlook. You are an inspiration for sure. I am hard of hearing and fluent in sign language as well. I also am know for having handicap pets that were to be put to sleep. One cat for having no eyes and another that is deaf. Anyway, my question is do you travel or tour with your story to help awareness? If so, I would love to know and perhaps have the opportunity to meet you in person. I would so love to just sit and sign away. Do you ever come out to Rhode Island or is there a place in NY that people can reach out to you? You are awesome and amazing!
Thanks,
Sandy Tremblay

Peter Alexander on his sister, who is losing both her sight and hearing

Donna Olsen, Decatur,IL — Fri, 20 Mar 2009 16:29:39 GMT

Dear Rebeccca, thanks for such an inspirational story. We have a daughter with Ushers Syndrome I, and know many of the things you have experienced. You have brought awareness to so many and hopefully it will encourage support for research in this country.

Peter Alexander on his sister, who is losing both her sight and hearing

Logan 5 Scott, El Paso, TX — Fri, 20 Mar 2009 16:29:39 GMT

Truly a touching story of inspiration and courage.

Peter Alexander on his sister, who is losing both her sight and hearing

Matt Grand Rapids, Minnesota — Fri, 20 Mar 2009 16:35:12 GMT

I've thought long about what I could possible say to you - I have no dysfunctions like yours. In other words, I am blessed with perfect health. (knock on wood!!!) I don't really want to politicize your tragedy, but I was so taken by your cartoon description of the ever-smaller hole and growing blackness, that I can't help but make a comment about health care - I feel the one way I can help people such as yourself, or any other disease that needs research and conquering, is to either demand a shift in spending priorities of existing taxes. or pay more taxes. I'll pray for God's grace and guidance for your life.

Peter Alexander on his sister, who is losing both her sight and hearing

Matt Grand Rapids, Minnesota — Fri, 20 Mar 2009 16:36:40 GMT

Peter Alexander on his sister, who is losing both her sight and hearing

Laurie Brinker — Fri, 20 Mar 2009 16:36:57 GMT

Rebecca, thank you for your wonderful story. My niece Megan O'Neill was diagnosed with Usher's about 2 years ago. We pray for her and for a cure EVERY DAY. thank you

Peter Alexander on his sister, who is losing both her sight and hearing

AnhVu Nguyen, Seminole, FL — Fri, 20 Mar 2009 16:43:30 GMT

Great story on a remarkable person!

Peter Alexander on his sister, who is losing both her sight and hearing

Randy - Sherman Oaks Calif. — Fri, 20 Mar 2009 16:45:40 GMT

Rebecca:

I was very moved by your story and amazing attitude. Will be praying for you and your family as you continue on this journey. God bless you, praying for a miracle.

Peter Alexander on his sister, who is losing both her sight and hearing

Yvonne Austin Texas — Fri, 20 Mar 2009 16:45:50 GMT

Rebbecca I read your story and I was amazed and felt that I am not alone. I am also Deaf and have RP and found out that just recently but had the condition for a very long time did not realized that I have RP when I was younger. I am glad you open up your story to tell everyone about your condition it made me feel really good and that I am not alone.
Thank you.

Peter Alexander on his sister, who is losing both her sight and hearing

Barb Westfall, Hamilton, MT — Fri, 20 Mar 2009 16:47:08 GMT

Thank You for being so brave!! You are an inspiration to everyone! I have half your disability, retinatitis pigmentosis. I am 40 and have more vision in my left eye than the right eye. I was told when I was 18 and set about to prove that doctor wrong, sadly he was right. I feel very isolated and it is hard to explain this disease and so mostly I don't tell people. I live in Montana and have felt like there is not much hope and I am tired of feeling like a guinea pig when some doctor wants to try something. I have had some injections in me bad eye (right eye) as an attempt to see if it would have any effect. I have also been left in some bad situations because people didn't understand or care. Some of the childhood stories of running into stuff are funny on some days and not on others. I received stitches a few times near my eyes before my family accepted that I couldn't see very well in the dark. I do enjoy everyday for the beauty of what I can see and experience and it is nice to know I am not alone. That is probably the hardest part, feeeling like the only one and all the awkward social sitituations.
Please write if you can if not Thank You for being so brave for all of us. You have a great family!
Barb in Montana

Peter Alexander on his sister, who is losing both her sight and hearing

Rebecca Alexander — Fri, 20 Mar 2009 16:47:54 GMT

Hi Everyone!!

This is Rebecca Alexander and I just want to THANK YOU ALL for your encouraging words. It means the world to me. I also really appreciate those of you who have opened up about the challenges you face. It's strange that people consider me an inspiration because I find so many others to be inspirational to me. SENDING A BIG HUG TO ALL OF YOU!

Peter Alexander on his sister, who is losing both her sight and hearing

jeff elliott, raleigh, north carolina — Fri, 20 Mar 2009 16:50:53 GMT

I have a brother that was recently diagnosed with a very serious cancer - they are all serious. He was told that there is no cure for his type of cancer and that he probably has 3 to 5 years to live. This sucks!!!
I asked the obvious question to God why him, and I did not get an answer for a 5 or 6 months. Similiar to you he has taken each day head on, doing whatever he can to be as healthy as he can be. Anyway, I got my answer - He has the faith, support and strength to handle it. I know that sounds cliche, but he inspires me every time I speak with him. I pray that there will be medicines/treatments that will cure your disease. If not, think what you can do for yourself and others that are blind and deaf to improve your/their quality of life. You are already doing things to prepare yourself for this situation, you should be commended to have this courage-never lose that!!!!
You can inspire others to do great things!!

Peter Alexander on his sister, who is losing both her sight and hearing

Rebecca Shaffer, Mass — Fri, 20 Mar 2009 16:51:30 GMT

Rebecca, God bless you. My baby girl was born profoundly deaf and was herself tested for Ushers. I will never forget waiting for those results. Thankfully she tested negative, and has since received her 1st cochlear implant. She's still the same little troublemaker, just now when she wants to she can "hear" us. I hope with all my heart that my daughter grows up to be as strong and independant of a woman as you are.

Peter Alexander on his sister, who is losing both her sight and hearing

Lisa Downey, Bayonne, NJ — Fri, 20 Mar 2009 16:52:29 GMT

As someone diagnorised with Usher's III with vision loss but not experiencing significant hearing loss as of yet and with a sister who has the same disease and is losing both senses, it is always so encouraging to see stories publicized about this desease. Rebecca's story is particularly inspiring because it reinforces that this disease does not have to stop the lives of those who suffer from it.

As a wife and mother of 3 with a 4th child on the way, I can appreciate Rebecca's zest for life and her determination to have a life filled with things that come more easily to fully sighted and hearing people. While so many things are more challenging for us, Rebecca reminds us that this doesn't mean we can't have or don't deserve them.

There are many fully sighted and hearing people who can see beyond the disability. My husband recognizes and admires my determination rather than being turned off by my disability. Sure, we may switch conventional roles sometimes like he does the grocery shopping and I pay the bills but that's what makes our family work.

It is so important for stories like Rebecca's to be seen and heard so that the multitudes of people who have no knowledge of this disease get a better understanding of it and, hopefully, it can become a bit more mainstream in terms of fundraising for research.

Peter Alexander on his sister, who is losing both her sight and hearing

Laura — Fri, 20 Mar 2009 16:59:13 GMT

Rebecca-You truly are an inspiration. My husband who is 32 has Retinitus Pigmentosa & has been told that he will also most likely lose all of his vision within the next 10 years. With hope from the FFB and funding I pray that such diagnoses will be a distant memory and that a cure will be in sight.

Peter Alexander on his sister, who is losing both her sight and hearing

Kathy Bimber Warren Pa — Fri, 20 Mar 2009 17:03:55 GMT

Rebecca, I saw you on TV today and all I have done is cry every time I think of you. I have had a brain tumor and it has taken a lot of my eye sight. I can't read anymore and some days I can't even see well enough to watch TV. I have lost most of it on my left side and I have no death preception. I am waling with a white cane and it does help me get out of the house by myself. After watching you on TV I went to the Y am I swam some extra tlengths just to prove I could do it. I was down today and you helped me Thank you.

Peter Alexander on his sister, who is losing both her sight and hearing

Steve Riley PhD, P.O. Box 406, Brownsville , VT — Fri, 20 Mar 2009 17:07:38 GMT

Regardless of the lack of the phenotypic expression of a few genes that result in your gradual loss of two senses, the phenotypically expressed genes I do see are beautiful and sexy as hell...I would take you out in half a heart beat...
Best-
Steve

Peter Alexander on his sister, who is losing both her sight and hearing

Grant Noeske, Freeport, IL — Fri, 20 Mar 2009 17:12:26 GMT

My sister, who died 6 years ago (in her 30's) of a pulmonary embolism, had Retinitis Pigmentosa. It's always good see information about RP and related conditions publicized. A family friend made the comment at my sister's funeral that for someone fighting RP and other health problems, she couldn't have come from a better, more supportive family. That's always stuck with me and certainly appears to be the case with you and your family. I wish you all nothing but the best and really enjoyed your story.

Peter Alexander on his sister, who is losing both her sight and hearing

V Joshua — Fri, 20 Mar 2009 17:13:44 GMT

I tell my children that there is always someone who is having a more diffcult time than you.You are a prime example. I know that you are fighting for those things that we take for granted. You continue to fight. I will keep you and your family in my prayers. God Bless you

Peter Alexander on his sister, who is losing both her sight and hearing

Nenamozha, Denver, Colorado — Fri, 20 Mar 2009 17:16:31 GMT

I am truly amazed by your, strength, your beauty and your passion for life!!!!! Lot of people just waste their lives, but not you. and that is incredible, you have my respect!! :) wow...

Peter Alexander on his sister, who is losing both her sight and hearing

Katie Lewis Salt Lake City UT — Fri, 20 Mar 2009 17:19:51 GMT

My Darling Becky,

You are my hero. I am so proud of you in so many ways. I am so lucky to have felt the warmth of your smile and that exuberant embrace last year at your mommie's birthday party. Your eloquence is breathtaking; you really need to start a speaking career Beck. Thanks to you and Peter for putting together one of the BEST 5 minutes on television that I have seen in a long time. I really believe that if our society, as a whole, concentrated more on people with character and optomism we would all benefit in ways that we can not imagine. Love you both - Katie

Peter Alexander on his sister, who is losing both her sight and hearing

N. D. Fay, Yulee, Florida — Fri, 20 Mar 2009 17:32:11 GMT

When I read about this brave young woman and those of others who posted here with similar afflictions, I can't feeling intense anger at the way our government spends so many taxpayer dollars on pork instead of funding research into these dreadful conditions.

Peter Alexander on his sister, who is losing both her sight and hearing

Mike, Bakersfield, CA — Fri, 20 Mar 2009 17:32:41 GMT

"I’ve been rejected by people I’ve dated when they found out about my disabilities."
At least you didn't have to waste one more day with someone who wasn't going to 'have your back' when times get tough. I know you will find people you can trust to have around you, just be honest.
I hope they can find a way to halt the progress of this horrible disease. God bless.

Peter Alexander on his sister, who is losing both her sight and hearing

susan halpern rochester, ny — Fri, 20 Mar 2009 17:34:59 GMT

Thanks to my sister in law who sent me on the link to your story. I feel like I am fast fowarding 10 years in my daughter's life. She was diagnosed with a severe to profound hearing loss when she was 3 but it took until she was 17 to be diagnosed with Usher's despite my comments to her eye doctor that she couldn't see at night. She now has a WONDERFUL doctor, Dr. Mina Chung, here at the Strong Hospital in Rochester,NY that takes care of her. Fortunately, her vision fields have remained the same for quite some time, but she does not drive at night, see in the dark and needs to be places at night that are well lighted. Loud and dark places just don't work for her. She has had a cochlear implant since she was 3 and had a second when she was 17. She has NEVER left anything stop her-nothing ever stands in her way. She has been abroad numerous times (a few on her own), has spent summers in Israel studying and is currently enrolled in graduate school at Michigan. Just as Becky is an inpiration to all who say the story, my daughter Sara is an inspiration to all who come in contact with her when they find out what she battles on a daily basis and how she overcomes. She is one of the most positive, caring and thankful people you could ever meet. Just as I said at the beginning, I feel like I was fast forwarding-the smile and positive can do anything attititude of Becky's is just what I see in my daughter.

Becky, there are wonderful doctors in NY who perform cochlear implant surgery. It has been a god send to Sara and it would be able to give you back alot of the hearing you lost. Sara has never heard and it has worked miracles for her, so for someone who heard at one time, it may be something to give you back what you have lost. Good luck and what a great story from you and your brother!!!

Peter Alexander on his sister, who is losing both her sight and hearing

Lillian Satterfield, Marietta, GA — Fri, 20 Mar 2009 17:38:29 GMT

The "Vision Walk" is this Sunday in Atlanta to support Foundation Fighting Blindness and our son with Ushers Syndrome will be walking with us.
He is 42 and has recently lost alot more of his sight. The loneliness I see and I am frustrated that one has to be considered literally totally blind before one can be in the tests such as the one recently that will stop the progression of RP.
Bob looks alot like your family and when I go to meetings for FFB, I look around the room and think how are we all related.
Bob has only recently not been able to hide most his sight problem in his working and home life. There has been a great deal of resignation with Bob (I think) in the past.
The family was told years ago how important we are to stay close as a unit for Bob and how true this has been.
Can't find new ways fast enough to help.
Lillian Satterfield, Marietta, GA

Peter Alexander on his sister, who is losing both her sight and hearing

San Antonio, TX — Fri, 20 Mar 2009 17:40:15 GMT

I was truly touched by your story. I have a teenage son who was diagnosed with a type of muscular dystrophy called facioscapulohumeral dystrophy - a muscle wasting disease with no cure or treatment. What a challenge this has been for our family. You truly do learn to appreciate each day and make life matter. Blessings and prayers for your family.

Peter Alexander on his sister, who is losing both her sight and hearing

Vickie — Fri, 20 Mar 2009 17:41:25 GMT

Hi Rebecca, I have Usher's Sydrome Type II. I have worn a hearing aid since I was 4, and have been losing more of my sight as time goes on. I no longer drive at night, and have had to make some adjustments in how I go about my daily life. Yet, I do not let it stop me. I find myself trying to do as much as I can each day. I try to keep a sense of humor when I do the klutzy things. You are an inspiration and with this story may more people be aware of this silent and little known disease.

Peter Alexander on his sister, who is losing both her sight and hearing

francis der, san francisco calif — Fri, 20 Mar 2009 17:43:24 GMT

Your story is very courageous. my daughter was born very hard of hearing, and it seems to be progressive. she now has ~70% loss and she worries about the day she won't hear my voice anymore. the doctors' worried this might be due to Usher's syndrome, which it wasn't. However loss a any "normal' part of life can ve grievous. I'm proud to hear how you, Rebecca, have coped and accomodate yourself. I can only hope my daughter and I can prepare her for the inveitible as well as you.

Peter Alexander on his sister, who is losing both her sight and hearing

Eric — Fri, 20 Mar 2009 17:53:07 GMT

Thank you for sharing your story and providing such inspiration. I have known your mother since she reached out to me when my son was diagnosed at age 3 with a retinal degenerative disorder. Facing these types of conditions does cause you to live in the moment, as you so eloquently expressed. One living-in-the-moment experience I would like to share with you: I was driving with my son when I saw a beautiful rainbow forming in the sky. I quickly pulled off the freeway and parked so I could show it to him. This impulse would never have occurred to me if my son did not face the prospect of having his vision completely taken from him. Seeing a rainbow is a wonderful thing.

Peter Alexander on his sister, who is losing both her sight and hearing

Shelley Casey — Fri, 20 Mar 2009 18:32:54 GMT

Rebecca,can you look into cochlear implant surgery?
A much-older (than you) friend had it, after losing his hearing to a genetic condition that forced him to retire early, etc., etc. But since he had had hearing previously, the prognosis for cochlear implant (one ear) was very good, and the result has surpassed his expectations 1000-fold. With follow-up therapy, he has 'relearned' sounds, retrained his brain to work with the device, he can hear, converse, and has resumed many activities he had lost for a decade+.
Best of luck to you, in all you face. You are very strong & brave. Shelley

Peter Alexander on his sister, who is losing both her sight and hearing

Jeff, Seattle WA — Fri, 20 Mar 2009 18:37:48 GMT

I have a friend in Oregon named Rachael Scdoris who is a legally blind outdoor athlete. She would tell you to hang on to the people that love you, and hang on to your dreams. Let your brother and your family help you hang on to both.

Peter Alexander on his sister, who is losing both her sight and hearing

Raymond, Houston TX — Fri, 20 Mar 2009 18:42:31 GMT

Rebebecca,

Your disability serves to remind us of the frailty that is our physical existence. Your courage and grace show us the strength and beauty that is the human spirit.

You are truly a blessing for those who come across your path.

Thank you!

Peter Alexander on his sister, who is losing both her sight and hearing

Allen Winfree, Baltimore, MD — Fri, 20 Mar 2009 18:43:15 GMT

I would seriously date you regardless of your disability! I'm 30 and deaf myself. I live my life to the fullest too. Let me know if you decide to go out ;-)

Peter Alexander on his sister, who is losing both her sight and hearing

Jim, Buffalo, NY — Fri, 20 Mar 2009 18:46:31 GMT

Rebecca, like others, you are truly an inspiration. What a simple thing to "live life to the fullest," yet so many people take it for granted. To have people reject you for having usher just doesn't seem right. At least you have family and friends on your side not to judge you. Live, Laugh, Love

Peter Alexander on his sister, who is losing both her sight and hearing

Angela, New Orleans — Fri, 20 Mar 2009 19:16:08 GMT

Rebecca you are truly an inspiration. You took this disease head on. I wish you the best, people like you are who I tell my son to admire and look at as heros. He is 7 and I will tell him your story today when i pick him up from school. Good bless you. You and your family is in my prayers

Peter Alexander on his sister, who is losing both her sight and hearing

Mavis, Meridian, ID — Fri, 20 Mar 2009 19:17:20 GMT

You are a lovely woman and have a great brother. Thank you for sharing your story. If you have not already considered a Guide Dog For the Blind, I recommend that you contact them. (800-295-4050 in CA). Since you are capable with a cane you qualify for a Guide Dog, that can help you live an independent life. Guide Dogs are trained to handle multiple handicaps. You do not have to wait until you completely lose all your sight. Your positive outlook about your condition and your loving family and friends, will help you with life's challenges.
I wish you the best.

Peter Alexander on his sister, who is losing both her sight and hearing

Todd, Wisconsin — Fri, 20 Mar 2009 19:22:23 GMT

What a beautiful, inspirational Woman. I cannot imagine what she is going through, but can youbelieve that Men have left her for something like this? Myself, I would be so inspired by the way she is living for the moment and it would drive me to want to be the one to help her when things get tough, It is such a tragic story, but WOW, what a Woman!! God Bless You, Rebecca.

Peter Alexander on his sister, who is losing both her sight and hearing

waldemar Kasriels westport new york — Fri, 20 Mar 2009 19:27:08 GMT

Dear Rebbecca On the clip that i saw of you in central park i noticed that you have a puppy berner. i am sure that he brings you a lot of love that you deserve.We raise these little guys and have two beauties now .Our Anette went to Westminster some years ago. They will always love you even in these difficult times. Be careful.i'm sure you know how they love to tangle themselves in your legs..We will be thinking of you and your little pup.

Peter Alexander on his sister, who is losing both her sight and hearing

Tom Theis — Fri, 20 Mar 2009 19:32:58 GMT

Hi Rebecca,
Just wanted to let you know I seen and heard you talk on the today show this morning. You were awesome. I have a friend who has the exaxt series of eye sight as you do. He has been fighting this like you in his way for about 25-30 years so far.
Keep up the great life your leading. It's awesome!!!!

Peter Alexander on his sister, who is losing both her sight and hearing

Erick, Miami, Florida — Fri, 20 Mar 2009 19:35:47 GMT

Those guys are crazy i would totally date you!!!

Peter Alexander on his sister, who is losing both her sight and hearing

Tracy, Sioux City, IA — Fri, 20 Mar 2009 19:38:47 GMT

You are the most amazing woman I have ever seen. Anyone would be truly blessed to have someone like you. Your personality, will, and determination are very rare in people these days it seems. You have made my day and i thank you for sharing. Also, this is one guy that would never leave or reject you. If you could leave an e-mail address i would love to talk with you. Maybe some of the things that make you special would rub off!

Peter Alexander on his sister, who is losing both her sight and hearing

Barb Studio City Ca. — Fri, 20 Mar 2009 19:40:15 GMT

Rebecca and Peter, I have know your wonderful mother all of our lives as we are second cousins and grew up near each other. I have often thought of you, Becky, over the years and hoped that you were doing well and Peter, I follow your career. How proud for our joint families to have you among us!

Peter Alexander on his sister, who is losing both her sight and hearing

arona — Fri, 20 Mar 2009 19:44:05 GMT

Sending love your way...You'll be a victor whatever cards you are dealt with - i can see it in you! NEVER Give Up!

Peter Alexander on his sister, who is losing both her sight and hearing

Glenn Lieb. Findlay, Ohio — Fri, 20 Mar 2009 19:47:16 GMT

Please be sure Peter Alexander sees this. There is a product that might help your sister. It is a 19 fruit juice called Mona Vie. We have to make the disclaimer that it is not a cure for any medical condition. But I have seem it do amazing things for my family and a doctor I met last night said it is doing amazing things for his patients. It is worth a try. 2 ounces in the morning and 2 ounces at bedtime is all it takes. The website you want to visit is MonaVie.com

Peter Alexander on his sister, who is losing both her sight and hearing

Deb, New York, NY — Fri, 20 Mar 2009 19:54:19 GMT

Rebecca, I am one of your spinning students and I have to say that I would never have known what you are struggling with. You are always so upbeat and happy. I love your class!

Peter Alexander on his sister, who is losing both her sight and hearing

Steffan, Orem, UT — Fri, 20 Mar 2009 20:03:50 GMT

Thanks so much for sharing your story, your optimism and hope! When I found out that I had Usher's, I was devastated. I wondered if I could live a normal life. I determined that I should at least try! Life has been great! Now I'm married, have 2 boys, got a great job. For those afflicted with disabilities, don't let doubt be one of them.

Peter Alexander on his sister, who is losing both her sight and hearing

David K. M. Klaus — Fri, 20 Mar 2009 20:14:19 GMT

I thought Helen Keller was one of a kind, I had no idea there were 16,000 others like her in the United States. I am dumbfounded and horrified, both.

You are a braver human being than I am capable of being, and your courage should be honored.

And may the soul-less thugs who abandoned you in loud, dim bars because you're disabled get in their lives exactly what they deserve.

Peter Alexander on his sister, who is losing both her sight and hearing

Paula Warren-Peace, Mississippi State, MS — Fri, 20 Mar 2009 20:16:50 GMT

Hi Rebecca. I did not see the story this morning but did receive an email from FFB about you. I just wanted to say "keep up the good work." I have RP and am currently completing my Ph.D. (graduate in May). You can do anything you want - don't let Usher's get in your way! I am now 47 and still have some central vision. At 15, I was told that I would be totally blind by the age of 30. Don't get caught up in the psychological tug of war with the medical community. Just keep on keeping on and live your life to the fullest!

Peter Alexander on his sister, who is losing both her sight and hearing

Patti Carver,Roswell,Ga. — Fri, 20 Mar 2009 20:21:10 GMT

I have Ryan's Syndrome I have little field vision I was born like this.And I have other eye problems I will lose my sight too in a couple more years.I did not even know until I was 19 that I did not have much field vision.I have lazy eyes too so I have had a bad school life kids always teased me.My mom even would get on to me because she thought I was clumsy which like you I was always walking into things and tripping over things.And she thought I could control my eyes so they wouldn't look cross but I just cried.Even when I told my mom about me having the field blindness she would not believe it.I never had my eyes straighten because they told me they couldn't.My mom died a couple of years ago I took care of her best I could she had alzhmiers and cancer.I am like you too because I love white water rafting I have jumped off a cliff I love inner tubing down a river.But T do not drive so I do depend on someone that I hate I ride a bike but the police stopped me and told me I could not ride on the sidewalk but I just can not ride my bike in the street.I have worked but I got laid off.But I have been advised about getting disablity but right now I am trying to find another job.God has his reason for all of us so we just have to make the best of life I would to go sky diving like you before I lose all my vision.Hugs and praying for a cure for you,Patti

Peter Alexander on his sister, who is losing both her sight and hearing

KS, Vancouver, WA — Fri, 20 Mar 2009 20:21:28 GMT

Rebbecca, your brothers interview was such a jarring reminder of how society today tends to lament about such trivial things that by the end of the video, you, with your exuberant spirit and amazing attitude, brought a grown man, a street hardened former paramedic and commercial diver, to tears that even 10 minutes later won't stop when I reread what I am writing!
When my son and wife come home today I will look at my life a lot differently from now on.
I hope you win your struggle, in the mean time, may your life be full and continue to serve as a reminder to the rest of us that there should always be time to stop and look around because you never know when it will be gone. THANK YOU and Good Luck.

Peter Alexander on his sister, who is losing both her sight and hearing

M. Grochowski, Ft Worth, TX — Fri, 20 Mar 2009 20:24:23 GMT

Rebecca, what a breath of fresh air you are, in a world of increasingly self-centered & self-pitying people. You & "research" with be in my prayers! I am curious if you have ever sought alternative/naturopathic medicine or treatments?? I recently sought them out for my own issues, and they have made such a difference... www.health-truth.com is my nutritionists website... he covers a long list of every health issue you could imagine! God Bless you!

Peter Alexander on his sister, who is losing both her sight and hearing

Holly Ginley, Cleveland, OH — Fri, 20 Mar 2009 20:25:03 GMT

Wow... it was as if I was watching and hearing my own heart speaking as Rebecca spoke in the interview. This is by far the disease I have had most of my life. Peter - I can feel your hurt and pain for your sister but at the same time feel the feelings of how proud of her you are. I got a phone call to watch this video as it relates to my disease. My sister, brother and I all have the disease. If there was ever a way to get in contact with Rebecca, please give her my email hollyginley@yahoo.com. I want to just thank her for putting all of my years into words in a 10 minute video. We are on borrowed time, but make the best of what we know and can see, hear and feel today. If someone was to look at me today, they would have no idea, but I to know it can be anytime now as I am 38. I will pray for you now along with my family to hope for some cure along with peace with this if it ever does happen full blown. Keep up the spirit that you have as it gave me a little more zest back in me! Thank you for that!
Can someone email me this video? It does not seem to work for me!

Peter Alexander on his sister, who is losing both her sight and hearing

Deena Peterson, Marysville, CA — Fri, 20 Mar 2009 20:25:41 GMT

Peter and Rebecca, thank you for sharing with us. I will pray for people to be more understanding, compassionate and aware of your needs, Rebecca. God bless you both, and know you are inspiring just for being so willing to share.

Peter Alexander on his sister, who is losing both her sight and hearing

J McD, Seattle, WA — Fri, 20 Mar 2009 20:28:40 GMT

Your story, spirit and projection of it all are that perpetual light at the end of the tunnel, so many of us hear about and keep looking for; too often unaware that we are immersed in it. Thank you for the inspiration and release from shackles of self pity. May God look favorably upon you and heal you. Your story hopefully will bring focus to this disease and hope to the countless who share your circumstance. I know it has brought inspiration and gratitude to many who heard this story. MAY GOD BLESS and HEAL YOU!

Peter Alexander on his sister, who is losing both her sight and hearing

Deb Kogler, Mentor, OH — Fri, 20 Mar 2009 20:38:05 GMT

Rebecca & Peter,
Thank you for the wonderful & inspiring story. I am glad that the Today Show aired this. I am a low vision specialist who deals with these issues on a daily basis; and it is important to let people know that they can still live a fulfilling life with the "help" of others and aids. So many people are unaware of the help that is avialable. I encourage you to keep your story alive and continue to deliver your message. It would be a great benefit to the viewers of your show, maybe even getting Meridith involved since her husband is also vision impaired. It's important to remember : NBA ~ Never Be Alone.
Prayers & Praises to you both!

Peter Alexander on his sister, who is losing both her sight and hearing

Libby Shapiro 21385 Marina Cove Circle Aventura,Fl 33180 — Fri, 20 Mar 2009 20:43:08 GMT

Saw your message on the Today show & was very moved.I have a cousin afflicted & am willing to help support your cause

Peter Alexander on his sister, who is losing both her sight and hearing

Dawn Hilaire — Fri, 20 Mar 2009 20:50:57 GMT

Rebecca,

I have Usher's Type II. I would love too correspond with you via email if it's possible, or AIM Instant Messenger. The Today's Show video made me cry. A reminder that I am not alone, nor is my brother. We both have Type II. Would love to hear from you :-)

Peter Alexander on his sister, who is losing both her sight and hearing

Holly, Cabo San Lucas, Mexico — Fri, 20 Mar 2009 20:51:26 GMT

You are a bright light in what can be a dark world at times. Keep shining! Is stem cell therapy an option?

Peter Alexander on his sister, who is losing both her sight and hearing

Fiona O'Keeffe, Hamilton NJ — Fri, 20 Mar 2009 20:53:12 GMT

My sister is 35 and has usher's syndrome. We'd like to meet up or talk to others with this condition. Is there a way to contact Rebecca?

Peter Alexander on his sister, who is losing both her sight and hearing

Erin Johnson, McAllen, TX — Fri, 20 Mar 2009 20:56:44 GMT

I was so happy to have turned on 'The Today Show' and to see your story, Rebecca. I am hard of hearing and have been for most of my life and a little over a year ago I was diagnosed with retinitis pigmentosa. Seeing your story has given me inspiration to continue to live my life to the fullest and it's nice to know that I am not alone. Thank you for your courage and I know that someday they will find a cure for us and those suffering with retinal degeneration/hearing loss.

Peter Alexander on his sister, who is losing both her sight and hearing

wheels460 — Fri, 20 Mar 2009 20:57:59 GMT

Life goes on even though it is not what you are used too. Chin up one day above ground is better than a thousand below. Have lived 16 years with MS

Peter Alexander on his sister, who is losing both her sight and hearing

Marlene Millard, Shannon, Georgia — Fri, 20 Mar 2009 20:59:32 GMT

I also have R.P. vision & hearing gone. I am 60 years old and live like I was 4. The energy and happiness is still there. I recently retired from my job as office manager for a local community theatre after nearly 20 years of a one girl office! Just hope people don't feel sorry for us, just enjoy us, and have fun learning new things. That is what life is ALL about.

Peter Alexander on his sister, who is losing both her sight and hearing

Curious, Quakertown, PA — Fri, 20 Mar 2009 20:59:38 GMT

The ability to hear does not mean we know how to listen, the ability to see does not mean we have vision. Silence gives us the ability to hear angels sing, and blindness allows us to see heaven's beauty. Should this come to pass-and we pray it will not-rejoice in knowing that what you will sense, the rest of us can only dream about. God will be with you always...even if you feel we are not.

Peter Alexander on his sister, who is losing both her sight and hearing

KH, Soo, MI — Fri, 20 Mar 2009 21:02:16 GMT

Keep on keepin on. This is so moving...what an inspiration. I would like to give those people who left you in the bar free tickets to a sensitivity seminar somewhere. Some people are downright rude when it comes to compassion...friends and otherwise. Trust me, with MS and Fibromyalgia, I know.

Peter Alexander on his sister, who is losing both her sight and hearing

Kristin, Denver, CO — Fri, 20 Mar 2009 21:07:35 GMT

Rebecca, My Sister has Ushers, I was so glad to hear your story, I struggle just like your brother. It's so hard to explain to people as they have never heard of Ushers and simply cannot imagine. My Sister does not live in the same state as I so I feel SO helpless. I will be thinking and praying for you Rebecca and all others with this "sad" disease. I hope they can find a cure.

Peter Alexander on his sister, who is losing both her sight and hearing

Steve Selasky, Rockford, Michigan — Fri, 20 Mar 2009 21:21:05 GMT

Rebecca and Peter, thank you for your story. Both you and your brother will be in my prayers.

Peter Alexander on his sister, who is losing both her sight and hearing

Lillian Caldwell, Baton Rouge, LA — Fri, 20 Mar 2009 21:33:36 GMT

Rebecca: Thank you so very much for sharing your story. My daughter is 38 and has Retinitis Pigmentosa. She has lost her peripheal vision and has not been able to drive for 3 years now. She has a significant hearing loss and Usher syndrome has not yet been determined as she in the process of having genetic testing. I will pass your fantastic outlook on to her. We are currently seeking mobility and orientation training for her here in Baton Rouge, Louisiana.
Again, thank you for sharing your story and your courage as I know this will help her knowing she is not alone with this disease.
God Bless You.

Peter Alexander on his sister, who is losing both her sight and hearing

Sonia, Chicago, IL — Tue, 24 Mar 2009 17:03:45 GMT

I know what you are going thru, as I too have that nasty disease. Like you, I have strong family and friends who care about me. I am still working on my anger because; I have so much pain (Life cruel joke). It taken me along time to realize that I am not the only one who dealing with both hearing and vision lost. Your story reminds me that I am not alone. Thank you, for opening up to the rest of us who feel alone

Peter Alexander on his sister, who is losing both her sight and hearing

Laura Stopforth, Durban, Kwazulu-Natal, South Africa — Tue, 24 Mar 2009 19:22:54 GMT

Hi, Rebecca
I, too have Ushers Syndrome (Type II, though, so at least my hearing loss is not progressive). Have not had the privilege of seeing your story on NBC - live in South Africa. Would love to contact you and share experiences - know no-one with Ushers. Am also in the medical field, so we may have some things in common. Hope to hear from you soon.
Regards Laura (33)

Peter Alexander on his sister, who is losing both her sight and hearing

Suzanne Lawlor, Oakland, CA — Tue, 24 Mar 2009 20:07:41 GMT

Dear Rebecca,
I am deeply touched by your courage and willingness to face your challenges with an open heart and so much wisdom. Thank you for letting us share this journey with you and be ispired by your example. May you be blessed in all ways. Should you want to pursue a non-traditional approach to healing, John of God, the Brazillian miracle worker is the one person I personally know who can help those with incurable diseases. He is a genuine miracle worker. Info on him can be found at www.johnofgod.com. He will be in the U.S. at the Omega Institute at the end of September. He can also be visited in Brazil. Amazon carries a wonderful, detailed book on him.
Love and light and so much gratitude for you, Rebecca,
Suzanne

Peter Alexander on his sister, who is losing both her sight and hearing

Jeri, Warwick, RI — Tue, 24 Mar 2009 20:09:11 GMT

Hi Peter & Rebecca!! THANK YOU SO VERY MUCH for bringing this to the TODAY show! I have RP (retinitis Pigmentosa.) I am an identical twin as well, my twin has it too! I would really love to speak w/u because I am 35 and I am NO where close to where you are with how you so graciously deal with it! So positively! Just the fact of never have or ever will be able to just get in my own car and go somewhere "WHEN I WANT TO" instead of always waiting for someone! I've missed out on so much due to lateness & forgetting people/friends,etc.

I pray to GOD that HE will allow all our organizations searching/working on a cure for Ushers & RP! That they could find a cure before we lose what we have left.

Thanks for such an inspiring story! I am not a crier, but when I saw Peter and Meredith and you of course Rebecca, presenting your story, WOW! Tears came out of my eyes! It'd be so nice if I could develop the attitude you have! I guess I have never accepted it and just can't get over how "ALONE" i feel! I don't have a supportive family! And not many friends either!
God Bless you Peter & Rebecca and your family! It made me cry to read/hear/see just how much support you do get from your family/friends!! That is so awesome!!

Peter Alexander on his sister, who is losing both her sight and hearing

Natalie, Valparaiso, IN — Wed, 25 Mar 2009 00:04:56 GMT

Rebecca & Peter
I work with a multi-billion dollar Bio-Tech Company that has the largest full-scale genomic & proteomic labs- vertically integrated. We have 30,000 of the 300,000 plants in God's Pharmacy and we are studying them at the dna level- creating proprietary blends/products. I do not believe another company can compete in R & D. Cellular renewal & neutraceuticals are so important and I believe they are & will be playing a major part in healthcare down the road. I pray God leads you to the answers and know His will, will be done. Please contact me if you'd like me to connect you with the chief science officer to further investigate this company. Best regards- you are doing great! painmgmtvalpo@aol.com.

Peter Alexander on his sister, who is losing both her sight and hearing

Mike Smock, Hemlock, N.Y. — Wed, 25 Mar 2009 00:48:01 GMT

A true blue american, that's right true blue,I wish the working population in this country had that kind of work ethic, determination , drive, wisdom and so on!There is not to many people like you Rebecca , in this country these days. We need more people like you!Hurrahh

Peter Alexander on his sister, who is losing both her sight and hearing

John Micknowicz, Orange Park, FL, 32065 — Wed, 25 Mar 2009 01:47:29 GMT

Hi, I have not yet viewed the video, but I know (first hand) that you are a remarkable person. My wife has rp and has gone totally deaf in right ear and almost entirely in left ear. We are worried...we have had no help from doctors and haven't prepared. I have been searching for a stem cell miracle outside of the USA when I stumbled on this website. If you have any advice for us, please let me know. She is a wonderful girl like yourself and to meet her is to love her. Thanks and God bless you. I am a witness to what you courageously go thru.

Peter Alexander on his sister, who is losing both her sight and hearing

Susanne Morgan Morrow, New York NY — Wed, 25 Mar 2009 17:31:19 GMT

Dear Rebecca, thank you for sharing your story. There is not much known, in the general community, about Usher Syndrome. Researchers are just now finding more strands and genetic mutations. With more findings comes more knowledge. This can only be helpful in the future. I am the Project Coordinator of the New York Deaf-Blind Collaborative (NYDBC), which is the statewide technical assistance project for children and young adults who are deaf-blind in the state of New York. We work to enhance the knowledge and skills of families, teachers, and related service providers on various etiologies causing deaf-blindness, such as Usher Syndrome. It is critical that young adults with Usher Syndrome have positive role models - thank you for playing that role. For more information on this topic or for further information on Usher Syndrome or deaf-blindness please contact us: NYDBC@qc.cuny.edu or visit our website at: www.qc.cuny.edu/NYDBC. Thank you, again, Rebecca - Susanne Morgan Morrow

Peter Alexander on his sister, who is losing both her sight and hearing

Kathy, Boston, Mass — Thu, 26 Mar 2009 00:15:09 GMT

Peter and Rebecca,
Thank you for doing such a difficult and wonderful story. Becky is such an inspiration and it is wonderful to see people living with their diseases and overcoming the obsticles in their lives.
I have a 16 year old daughter who has a rare syndrome also that has caused her to become deaf, causes eye problems, and has now caused arthrits. But everyday I see her act like every other 16 year old. I watch her and hear stoies like Becky's and relaize that people with disabilities can do anything and everything they want to. Thank you fo being so honest and sharing your story.

Peter Alexander on his sister, who is losing both her sight and hearing

Karen S., Levittown, PA — Thu, 26 Mar 2009 00:26:42 GMT

Rebecca,

My brother and I have Ushers too. We both took control of our hearing and were implanted with a cochlear implant. Him 6 yrs ago, me a year ago. I've lost my side vision, but I'm still putting one foot in front of the other.

Peter Alexander on his sister, who is losing both her sight and hearing

Cindy Forth, Toledo, Ohio — Thu, 26 Mar 2009 03:51:52 GMT

Great story :-)

I have Ushers II and it was first diagnosed when I was 12 years old. The Dr. told me I'd be blind by age 21 I'm now 44 and while I've had some peripheral vision loss, I've had no night blindness and my vision has held pretty steady over the last 30+ years. :: knock on wood ::

It's wonderful that this story is getting out and hopefully it'll generate more awareness. I do hope there is a cure found and soon.

Meanwhile, I don't know if this helps, but I take the Vit. A Palmitate and Billberry herbs regularly.

All the best to you and thank you for sharing your story ... you are a vision of courage and inspiration to all :-)

Peter Alexander on his sister, who is losing both her sight and hearing

Karen, Fort Myers, Florida — Fri, 27 Mar 2009 03:41:42 GMT

What an inspiring story! You are so full of life. My son has Usher Type 2, diagnosed when he was four. His hearing loss is not progressing, but his vision loss is. We are so thankful for the research that Foundation Fighting Blindness supports and we pray that a cure will be found soon! This Saturday is our local Vision Walk here in Southwest Florida. We invite everyone who can to come support us and the research to cure these diseases! www.visionwalk.org We would love to meet you Rebecca!

Peter Alexander on his sister, who is losing both her sight and hearing

Sue McPeek, Lousiville, Kentucky — Fri, 27 Mar 2009 12:29:30 GMT

I saw your story, and couldn't move from the television as my heart was touched. I would love for you to hear about a wonderful boy who is also dealing with Ushers. Jacob was born deaf, and is now dealing with the loss of his sight due to Ushers. His mother has started an organization to raise money for research called "Eye on Jacob". You may have already heard from her, as I made sure she knew about the piece. If not, feel free to contact me. I, myself, look at each day as a blessing, as I battled cancer after being diagnosed while 26 weeks pregnant with our daughter. Today she is a beautiful 8 year old, and I don't take anything for granted, nor do I lose perspective on things for very long. I believe there is power in dealing with adversity, and that power comes with the ability to find peace and beauty in each moment. You are a courageous, beautiful, gifted young woman with so much to offer us. Thank you for sharing your story, that it may help others.

Peter Alexander on his sister, who is losing both her sight and hearing

Kristi Ostrosky 76 Woodridge Lane Sunfish Lake, MN 55077 — Sat, 28 Mar 2009 16:55:11 GMT

You are truly an inspiration. My 18 year old son, Adam was diagnosed with RP in February. It was such a shock. In such a short time I have met so many people affected by vision loss and who have gone through so much and yet are so positive! I think of you alot and am sending prayers your way. I want to share your story with my son... when he is ready. Thanks again for sharing. You are amazing.

Sincerely,

Kristi Ostrosky
St. Paul, MN

Peter Alexander on his sister, who is losing both her sight and hearing

Alex ~ McKenna, Wa — Sat, 28 Mar 2009 17:39:41 GMT

Hi Rebecca, Watched your show with brother Peter whom I have always loved his presence on TV. I have the possibility of a way of healing yourself. It is simple & does not require you to be anywhere other than where you normally live. The system has been around for many years but has been hounded by the system & but it now appears to be gaining ground. If you feel like receiving detailed info then check me at my e-mail address You have courage. Alex

Peter Alexander on his sister, who is losing both her sight and hearing

Ali — Sun, 29 Mar 2009 11:36:03 GMT

ok.am ali from baghdad i have usher syndrom like u
please can u help me? i wait any one to help me please any way

Peter Alexander on his sister, who is losing both her sight and hearing

Kris Cue', Austin, Tx, Chairperson, Deafblind Service Center of Austin — Sun, 29 Mar 2009 22:27:04 GMT

Rebecca -

Many thanks to you and your brother for bringing Usher Syndrome and the Foundation Fighting Blindness to awareness! I have Usher Syndrome, Type II and though I don't always do so, I completely understand and agree with your reasons for living every day to the fullest. You go, Girl! Best of luck to you in your journey with Usher Syndrome and blessings to you and your wonderful family!

Peter Alexander on his sister, who is losing both her sight and hearing

Richard Farrell — Mon, 30 Mar 2009 23:20:54 GMT

Rebecca, As a man of 64, age makes me feel some of what you feel due to Usher Syndrome. Have you seen the phrase: “Enjoy life. This is not a dress rehearsal.”? I saw it on bumper sticker many years ago, but it was not until I turned 60 and a lost a friend or relative to death in what seemed every few weeks, that I began to feel some of the urgency you already feel. I have come to see all those previous years as a rehearsal and that now is “show time.” For me it prompts greater focus, more selectivity of what I spend my time doing and more concentration on what I want to accomplish, for time feels short, just as it does for you. As awful as it must be for you at times,hold tight to the fact that you have both a curse and a blessing. To paraphrase a country song, you have gotten the chance to live like you are dying. My best to you brave woman.

Peter Alexander on his sister, who is losing both her sight and hearing

mark, Santa Barbara — Wed, 01 Apr 2009 00:02:04 GMT

I have RP and can relate to your fears of being left in a dark bar or turned down by potential partners becuase of my disability... Your words are inspiring and helpful. Never give up hope! God Bless you.

Peter Alexander on his sister, who is losing both her sight and hearing

Gail C, Hendersonville, N.C. — Thu, 02 Apr 2009 13:43:24 GMT

My daughter-in-law e-mailed me your story.She has Usher's and she was so moved by your words. No one has ever truly understood what she goes through everyday and what the rest of us take for granted.
Your illustations of how the disease affects one's sight and hearing really hit home for her and for the first time she felt like she was not going through this alone. Thank you so much for sharing with all of us and I hope this will raise awareness for this devastating disease.

Peter Alexander on his sister, who is losing both her sight and hearing

J, Seattle, WA — Thu, 02 Apr 2009 18:26:20 GMT

Rebecca, you seem to be a beautiful woman both inside and out. I can only imagine what you must be going through, and I applaud you for not giving in and letting the illness run your life. If there were more women like you, the world would be a better place. I hope that one day soon you find someone who will be understanding and caring enough to deserve you.

Peter Alexander on his sister, who is losing both her sight and hearing

Janet Jones, Manhattan Beach, CA — Sun, 05 Apr 2009 01:39:54 GMT

Becky and Peter,

This is your cousin Janet writing from Manhattan Beach. Your mom told my sister Nancy that your story would be airing, and it certainly touched my heart deeply. I'm humbled and exceedingly proud that we share the same family tree. What a gorgeous, impressive tree it is! Our heritage has been shaped by family members who have accomplished much even in the face of adversity. You're a shining example, Becky, of how strong and resilient the branches of the tree are. Peter, I imagine this will become one of the most important stories you will ever tell. Thank you for sharing it with the world. Becky and Peter, please continue to make our family tree thrive.

Peter Alexander on his sister, who is losing both her sight and hearing

Annette Prince-Carey,Kingston,Jamaica,West Indies. — Mon, 06 Apr 2009 12:11:53 GMT

I am moved by your tremendous spirit, will,resolve, determination and bravery, in the face of this crippling disease.Your sharing has not only served to inform and educate,but has served to remind me of how tenuous the fabric of life is.I am awed by the love of your family and friends.Keep positive, as we pray together for a cure.

Peter Alexander on his sister, who is losing both her sight and hearing

Louise Giordano, Wilmington NC — Mon, 06 Apr 2009 21:34:57 GMT

My daughters have Ushers, and I would like to send them the Today Show video. Is there a way to view it with captions? They would benefit greatly from being able to read the interview.

You are clearly an inspiration to many people with an array of disabilities. Rarely has anyone even HEARD of Ushers, so thank you for bringing this to the world. I am immensely proud of my daughters as well; they are 40 and 37. One's a mom of three (no evidence of hearing or vision problems in the children!); both have professional jobs/careers. One is actually a school psychologist. You probably have much in common.

Best wishes for your continued successful and fulfilled life!

Peter Alexander on his sister, who is losing both her sight and hearing

J Amster Hollywood, Fl — Tue, 07 Apr 2009 01:40:19 GMT

Rebecca, I am truly in awe of your courage and bravery. Your story has toughed my heart in ways you will never know. Thank you for sharing. You are in my thoughts and forever will be in my heart.

Peter Alexander on his sister, who is losing both her sight and hearing

Cynthia Zanipatin — Tue, 07 Apr 2009 19:28:30 GMT

never give up, for you are our teacher. The world becomes better everyday when heros like you step up to life's most critical moments. Keep the faith that "WE WILL FIND A CURE" and always have the comfort and support of your family and the one's that look up to you. May God always bless you!

Peter Alexander on his sister, who is losing both her sight and hearing

gina tombrello, homewood, alabama — Tue, 07 Apr 2009 23:24:51 GMT

hi, my name is gina tombrello and i am in the b'ham, al. area. i was diagnosed with rp at 16 and was informed that i would never be able to drive at night. well, by age 29, i was diagnosed legally blind. that was a blow and i hung up my keys then and i had a 4 year old. i felt my world came to a halt. and it practically did for a year. i too, have been through the mill with multiple type testings and experiments. i was about 33 when i learned of my true diagnosis, ushers syndrome type lla. i am approaching 42 now and mentally, spiritually and physically doing well. my son will be 17 in june and has endured a lot with me. it has, however, made him the man he is becoming, and that one is a great one. a message of hope to you, rebecca, is i still have at least 40 percent of my vision left. no, i can not see in the dark or very well peripherally either, but what i can see is still a blessing. i use a cane half of the time, mostly at nite and in unfamiliar places. i have a ton of support and there WILL be a cure/preventive treatment in the next 5 years. i've yet to give up hope. i'm hanging in there with you and together we will combat this dz. please take care and thank you for doing this interview.
my mother and i are involved in the vision walk that will be taking place in houston in october, as well as in other major cities, to raise money to help all those in need of corrective vision. i hope that i get a chance to personally meet you someday. thank you again for doing this on the today show. good luck!!

Peter Alexander on his sister, who is losing both her sight and hearing

Betty Ann Tassinari Arlington Ma — Wed, 08 Apr 2009 14:16:54 GMT

Hi Rebecca. Wonderful story I was very excited to see it.My mother and her three brothers and sister have been living with this awful syndrome for decades.They are elderly now and also have many other issues. But their lives have been worth living and they are much loved by their families.Good to see national coverage ,many times through the years people were unable to believe such a thing exsisted.Carry on,it is all good.

Peter Alexander on his sister, who is losing both her sight and hearing

Suad Samara , chicago,Illinois — Sun, 12 Apr 2009 23:03:33 GMT

God bless you Rebbecca. I will pray for you and my husband. He has retinitis pigmentosa , and has been legally blind for almost 10 years now.Hope they find a cure:)

Peter Alexander on his sister, who is losing both her sight and hearing

Melanie — Wed, 15 Apr 2009 16:55:10 GMT

Hey! I too have Usher's Syndrom. I snow ski, and have hiked on the Appalachain Trail in Tennessee and North Carolina. I love being active and I love traveling to far away places. I totally understand how you feel Rebecca and can related to most everything you shared in your video. So, you ARE NOT ALONE! lol. I would love to be able to keep in touch with you, just to touch base once in a while... so, send an email if you'd like!! Take care and all my best!!

Peter Alexander on his sister, who is losing both her sight and hearing

Rachel Weeks, Columbia, SC — Wed, 15 Apr 2009 18:57:09 GMT

I feel like I am listening to my story through Rebecca. Everything she says and feels are my daily struggles. The sense of urgency to do things and experience life is very true. I wish there was a way to connect with Rebecca and others that have Usher's Syndrome. It might make the loneliness less apparant.
Usher's Syndrome Type II

Peter Alexander on his sister, who is losing both her sight and hearing

Alan, Dayton, OH — Thu, 16 Apr 2009 16:40:40 GMT

Your strength and courage is an example to us all. I sincerely pray that everything works out well for you. Best wishes always!

Peter Alexander on his sister, who is losing both her sight and hearing

Debbie Richardson Arlington Wa — Thu, 16 Apr 2009 16:43:34 GMT

I am an Aunt of a wonderful Niece and Nephew both who within the last couple of months have been diagnosed with Usher's type 2. Your story was so helpful especially to my niece Jodi who is 29. My nephew Ryan is 27 and a new father the news has been so over whelming, scary but your story gave them hope. I am having a golf tournament auction benefit to help raise money for a cure. Please if you have any advice or words of wisdom would be greatly appreciated. Thanks for your story. Debbie Richardson