This post contains sad news, as is case from many sharing their struggles with this terrible disease. Because it also contains a message of hope and opinion, from a family member of a participant in Prana Biotechnology's REACH2HD trial I am sharing it with this forum. The posting was from the PBT investment board on hotcopper - an Australian website, but I am taking it 2nd hand from the Yahoo financial message board on PRAN. Here goes, and Happy New Years to everyone. I pray 2015 brings forward new ways to battle HD.
Post from REACH2HD trial participant family member on HC
.
I found this post by a family member of a REACH2HD trial participant. This brings back why PBT2 needs to get to the market as soon as possible.
by Timtator on HC--
With much sadness my pop passed away from HD a few days before Christmas. It's unfortunate that medical breakthroughs aren't instantaneous and require testing and adjusting. Would be an ideal world if you could pull a cure out of a hat and apply it immediately.
As I've mentioned previously, I still have other family members who are positive for HD, but I remain hopeful that PBT2 is the solution.
Hard knowing that something as horrible as HD is waiting around the corner for some of your loved ones.
Hopefully the FDA surprise Prana with a Breakthrough Therapy status designation. As my mum was part of Phase 2 trial and was on the highest dose with no side effects, I can say with much conviction that this drug needs to be rolled out onto the shelves as soon as possible.
If the effects of PBT2 are to stop the onset or at least slow down the onset of symptoms until so late in life it has no impact, then it's important for people to be given access at the earliest point of time. It's no good waiting until my mum is in a wheel chair to give her a drug that doesn't help her out of the wheel chair, just means she doesn't get worse, especially if you could give it to her now and stop her ever having to go through HD to begin with.
I'm just ranting now. It's upsetting that's all. Guess I we'll just have to wait and see. Don't suppose a nice letter to the FDA is likely to help is it? haha
That would be a long shot.
None the less, thanks to everyone who supports Prana. They are potentially really going to be able to help people and there's no words that can describe how much that means to people like me.
Happy new year, hopefully it's a better one!
