Huntington Disease Lighthouse Families

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Yet Another Happy Story

Posted by Will 
Yet Another Happy Story
May 11, 2012 03:40PM
I had a few issues to overcome on Tuesday, but I was accepted into the Selisistat study. I'm on the drug now in my 4th day of 14 total. The only side effect so far is a feeling of lightheadedness and weakness for a couple of hours after each dose. I was surprised at the size of the pill - it's just a little larger than an aspirin.

I'll write a detailed report for the forum after I finish. I was glad to see that my skin didn't turn green and I'm not growing a new nose on my forehead. :-) I can imagine billions of little nano guys with machetes attacking my cells to cut out the mutant htt and leave the good stuff. That's what it's supposed to do. This study is scheduled to end in August and a Phase 2 trial should start sometime after that. Europe is ahead of us - they already have a Phase 2 trial going on.

Will
Re: Yet Another Happy Story
May 11, 2012 11:30PM
Great news! Maybe my mother can participate in the Netherlands!
Re: Yet Another Happy Story
May 12, 2012 10:36PM
Will, you are amazing! Keep us posted! (especially if you start turning green)

Carla
Re: Yet Another Happy Story
May 13, 2012 07:18PM
Great going Will. You are an inspiration.
Mike
Re: Yet Another Happy Story
May 15, 2012 04:40PM
Re: Yet Another Happy Story
May 21, 2012 05:51PM
Thanks for participating Will.
LJH
Re: Yet Another Happy Story
May 22, 2012 07:04AM
Hi Will

That's great news. What is the study hoping to achieve? Please say a cure? I tried to find out online.....

Thanks
Re: Yet Another Happy Story
May 22, 2012 11:32AM
Existing drug therapies can treat some the symptoms but selisistat is the first drug designed to help the patient’s body break down these ‘bad’ proteins so they can be disposed of more easily.

This I found on the internet!
Re: Yet Another Happy Story
May 22, 2012 12:04PM
I just finished the study today. I wrote a detailed report about the whole experience. If Marsha will PM me her e-mail, I'll send it to her so she can post it on the site. Marsha - I seem to have lost yours. Thanks!

Will
Re: Yet Another Happy Story
May 22, 2012 08:43PM
Will, I wouldn't mind reading your long post right here! It is so nice to see such positive & promising news, and it's not surprising that Will is participating & sharing it. Good for you, Will. And thank you. Both for the good you're doing with your participation in this & other things + for being such a positive voice in this forum.

How is your foot from the surgery, by the way?
Re: Yet Another Happy Story
June 16, 2012 09:54AM
Will,

Just returned from our first visit to Wake Forest to enroll my husband in the Siena study~ we will know in a few days if he gets in~
Hope he has postitive results once he starts the med.

Thanks for all you do
Ladyluck
Re: Yet Another Happy Story
June 29, 2012 01:17AM
Will- I'm a bit late in responding. . but this is such great news. I am so happy for you. We can always count on you for a smile smiling smiley Am looking forward to hearing about it.
Re: Yet Another Happy Story
July 21, 2012 11:49PM
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