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Anita Kim

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Syau-fu
Syau-fu SAYS:
Message from Rich: Today was…
Message from Rich:
Today was my last day at the Taub Clinic and I'm pleased to report very good progress in these past 12 days of therapy. The goal was to identify which of my leg muscles were weak and not receiving brain signals and then design therapy to help reconnect these muscles to the brain. With the help of the team at Taub, we've done that. And further, over the course of the two weeks, I made great strides in several performance areas and strengthened weak muscles!

But, that's just the first step. There's still a lot of hard work to do once back home. I'll be doing the specific exercises daily and applying the CI therapy every time I use my legs in daily life. I will also maintain regular contact with the clinic to report on progress and make needed adjustments.

This therapy was an important experiment, not just for me, but for all people afflicted with ALS. I was the first ALS patient ever to attempt this CI therapy and the biggest learning thus far was that I was able to tolerate the 4+ hours per day of exercise without becoming overly fatigued. This is contrary to the traditional thinking regarding ALS.

I have so many people to thank for getting me this far and I want to start by thanking Syau-fu for setting up this very successful fund raising campaign and for sacrificing her time to be with me in Birmingham during the first several days of therapy. Also my mom, Lynda, for the time she spent here helping and my wife, Sophie, for all of her love and support up to this point and for being here with me for these last several days of therapy.
But mostly, I want to thank all of you, the 90+ donors that gave so generously to make this a possibility. I kept you in mind at clinic every day and you'll continue to drive me to better myself and hopefully demonstrate the long term effectiveness of CI therapy for ALS.

Sincerely,
Rich
3 years ago
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Syau-fu
Syau-fu SAYS:
Greetings from Birmingham, A…
Greetings from Birmingham, Ala! Rich just completed the second day of his therapy. All is going well.

I wanted to share with you a link for a Wall Street Journal article that came out on Friday. Norman Doidge is the author of a book called "The Brain That Changes Itself." Chapter 5 is devoted to Dr. Taub. This Wall Street Journal article is about Dr. Doidge's new book (The Brain's Way of Healing) that was released last week. I believe there are several references to Dr. Taub in this new book.

http://www.wsj.com/articles/our-amazingly-plastic-brains-1423262095?mod=trending_now_5

Not only as it relates to ALS, but in general, neuroplasticity is exciting stuff!

Syaufu
3 years ago
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Syau-fu
Syau-fu SAYS:
We continue to explore diffe…
We continue to explore different treatment options for ALS patients. It is frustrating because when there is a promising drug in the horizon, it is often years away from being available, so people like Rich do not have access to the drugs or treatment. GM604 is one such drug. The early data from phase 2 clinical trials is very compelling. There is a petition circulating to make this drug available in the immediate future. Please follow the attached link to sign the petition.

https://www.change.org/p/food-and-drug-administration-als-patients-ask-the-fda-for-preliminary-approval-of-new-medication-genervon-s-gm6/u/9314081

Thank you, as always, for your support,
Syaufu
3 years ago
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Syau-fu
Syau-fu SAYS:
Thanks to all of you, we hav…
Thanks to all of you, we have exceeded our fund raising goal by 68%, raising $20,000!
Because of your incredible support, Rich is scheduled to start his CI therapy in Birmingham on February 5. Tentatively he will be there for 2 1/2 weeks. The goal will be for the therapy to help Rich with his balance and walking. Sophie, Lynda, and I will be tag teaming as Rich's support team while he is in Alabama. Fingers-crossed as we enter into this new frontier. Thank you for making this a reality!
With warmth and much gratitude,
Syaufu
3 years ago
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Syau-fu
Syau-fu SAYS:
Dear Anita, Thank you so muc…
Dear Anita,
Thank you so much for your support and generous donation. Both are much appreciated!
All the very best for the New Year,
Syaufu
3 years ago
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Anita Kim
East Boston, MA United States
CROWDRISING SINCE: Dec 31, 2014
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