Huntington Disease Lighthouse Families

For HD families ... by HD families
 

Questions for Marsha

Posted by Sally 
Questions for Marsha
September 03, 2007 03:57PM
I have been reading all the updates on the HDAC Home Page. Should I really be excited? What time frame are we looking at to find out if this cancer drug is a major treatment? Will it stop symptons or just delay/manage them like the other drugs? I don't feel that any of the current treatments really do enough. HELP!
Re: Questions for Marsha
September 04, 2007 03:14AM
As a newcomer to this forum, I feel so delighted to read all these information and updates. Previously all I knew was HD was incurable. Yes it is true for now. But there are many brilliant folks out there working hard to find a way to help us. Hope is there and I think we should be excited. Just my little thought.
Re: Questions for Marsha
September 04, 2007 07:29AM
Sally, I just updated my research overview here: [www.hdlighthouse.org]

I'm not sure what is going to happen with the cancer drugs. There are actually several with very good results in mice but they aren't drugs that people could take for years and years. I think that the approach will be drug development, making the drugs more efficient, more bioavailable, and less toxic. I don't understand that process but fortunately the people at CHDI do. The pharmaceutical industry does this all the time. So researchers have to come up with a compound, test it in the mice, then apply for permission to conduct clinical trials. All that takes years.

But things are happening in parallel. Compounds that promise to make a moderate difference are already in clinical trials. If they work, then people can buy some time while the major treatments are worked out.

I am encouraged by this new research because the potential pay off is so large in terms of making a major difference. It's impossible to tell how long it will be before all the problems with RNAi are worked out. But now we have some potential alternatives based on these major advances in basic research.

People often think we might wake up some day to the news that HD has been cured. It won't be like that because we are going to know what's going on and we'll be waiting for news each time there's a trial. We'll see more and more progress and our families will be part of making it happen.
Re: Questions for Marsha
September 05, 2007 06:19PM
Thanks...guess I'm still hoping for that miracle morning when I hear the news!
Re: Questions for Marsha
September 06, 2007 11:07AM
I'm right there with you Sally!!!! It will come! I just know it will!!!
Re: Questions for Marsha
September 06, 2007 03:24PM
What we WILL wake up to one day is the news that a Phase III clinical trial has worked. Since we will need a combination approach at least until the gene therapy technology is perfected, one successful trial won't be the whole answer. But I will certainly be celebrating when that day comes because a treatment will give people extra years of health and life plus it will be the beginning of the end of HD.
Re: Questions for Marsha
September 07, 2007 08:50AM
I just love to hear you talk like that Marsha...thumbs up smiley
Re: Questions for Marsha
September 07, 2007 09:29AM
I don't know if you've ever read the text with the Lighthouse picture. The last sentence is "It was chosen as a symbol of this Web site which will continue to offer a beacon of hope to families coping with Huntington's Disease until all of our ships are home safe in harbor."

I already have the graphic to use when HD is cured. It is a picture of ships anchored in a harbor with a rainbow.
Re: Questions for Marsha
September 07, 2007 12:35PM
i like that VERY much marsha!!!

You get an "atta girl" for that one!!!

i can't wait to see it there!!!
Sorry, only registered users may post in this forum.

Click here to login