Cool ... we're being spammed by a a Spanish site. :-) At least they're not selling t-shirts. The site is a nicely done HD site although I personally find the Google translation of their pages into English a little difficult to read - but it's better than my trying to translate it myself!by SteveI - Huntington's Disease Support Center
So many questions! We have an update to the research pipeline coming so some of those things will change. We hope to expand on the pipeline and research section during the coming year which we hope you will find useful. In a nutshell treatments are determined to be successful if results reach a certain level of statistical significance. Then it becomes available to us if the FDA approveby SteveI - Huntington's Disease Support Center
Hi Phillip. You are in a tough situation and you should feel good about what you have done for her. Most spousal caregivers hang in there bearing the full burden on their own - beyond what is best for their loved one (and always beyond what is good for their own physical and mental health). If you have family members who are willing to help you out then you should feel good about taking advanby SteveI - Huntington's Disease Support Center
Thanks for helping me figure this out Will. I thought Groups were joined by "liking them". I've been out doing lawn cleanup leaves all day today so it took awhile to see your post but as soon as I saw it I accepted the pending requests to join it.by SteveI - Huntington's Disease Support Center
The HDLF.org site is going through something of a renewal (or a reset). As many of you know Marsha has been providing her "research updates from a family perspective" on the HDSA.org Web site for a long time, but starting in 2013 those will premier on the HDLF.org Web site. We are also planning on a update to the Research Pipeline which should be very soon. To prepare for that we aby SteveI - Huntington's Disease Support Center
Thanks for sharing this. Steveby SteveI - Huntington's Disease Support Center
The research community (and the universities that host the research efforts) are always looking for more funding. As an HDSA board member I would be neglecting my duty to offer that you can make a donation to research through HDSA by making sure that the check says "for research" on it. The Hereditary Disease Foundation also accepts direct donations for research. Other than thoby SteveI - Huntington's Disease Support Center
Mare ... I'm glad you "stepped back on" because Will deserves another round of atta-boys! Awesome job dude. I can hardly walk so I'm VERY impressed.by SteveI - Huntington's Disease Support Center
If the head of our CIA can't keep his internet activity secret then I'm afraid there is no hope for the rest of us.by SteveI - Huntington's Disease Support Center
We use to have a recipe section but it didn't seem to have a lot of activity so I dropped it during one of the transitions to a new internet provider. Thicker liquids seem to make swallowing a little easier. Please check out the HD nutrition pages provided at Renette Davis's site. Steveby SteveI - Huntington's Disease Support Center
Thanks for the positive feedback. Nearly all of us share the same experiences with HD. We do the best that we can - and now we can not only learn from our own mistakes and our own successes, but we also have the opportunity to learn from the successes and mistakes of others who are willing and able to share. Thanks you EVERYONE for your contribution to the HD community. Steveby SteveI - Huntington's Disease Support Center
Deb Lovecky and Jane Kogan at HDSA deserve many kudos for their persistence in encouraging SSA to move this forward and make it happen. Click the link below for more details. Steveby SteveI - Huntington's Disease Support Center
I find myself totally unable to disagree with Matt - how frustrating. To answer Matt's question to Marsha we would, of course, continue to love and care for her as well as any children. How confrontational of you to ask. Even though we disagree with cbreeze about the rights of others to share their opinions our hearts go out to her for the struggles she goes through. She's part of our HD cyby SteveI - Huntington's Disease Support Center
Anyway, I believe that cbreeze is entitled to her opinion that no one else is entitled to their opinions. But as always, I reserve the right to ignore her opinion as she reserves the right to ignore ours.by SteveI - Huntington's Disease Support Center
This forum is for sharing opinions and thoughts. "Minding one's own business" is the opposite of what we do here. We invite differences of opinion and I personally enjoy reading explanations as to why people share a difference of opinion. However, this type of discussion may not be a good fit for everyone and some may find this uncomfortable. I agree with Marsha (no surpriseby SteveI - Huntington's Disease Support Center
Thanks for the feedback everyone.by SteveI - Huntington's Disease Support Center
"Play Through" does look intersting. However, it still seems to require some mouse skills. I also had to demonstrate a certain level of reading comprehension. I personally would like to see all Captcha sites replaced by this, but I'm still not sure it's a good fit for us. We can try it out to get feedback. And I can always personally subscribe those who have dificulty with it.by SteveI - Huntington's Disease Support Center
We try to delete all spam every morning (Marsha usually). However, if we aren't able to get to our computers we will do it as soon as possible. Since someone always flags the spam for us that does give us a heads up in case we are more focused on email (or cute cats Web sites) than the message board.by SteveI - Huntington's Disease Support Center
Marsha and I will be there for sure. I'm always surprised by the number of people we interact with on this site that we always seem to fail to run into at the conference (there are a lot of people at the conference - around 1000). It's always fun to have an opportunity to associate a face with the name. There is also a "Meet the HDSA Board" session that I'll be participating in.by SteveI - Huntington's Disease Support Center
Posted on this site at is an article titled. Research Opportunity to Give a Voice to People with Huntington's Disease and their Caregivers Researchers at Northwestern University are conducting a study to create a new self-report questionnaire to better address these issues. An important first step is to speak with people diagnosed with Huntington’s disease and caregivers to learn more abby SteveI - Huntington's Disease Support Center
With all of the odd events going on in our lives this past year we haven't had the opportunity to post any updates to the home page. So we are VERY grateful to Kelly for sharing her "Living Postive" story with us. Go to Click here for "Needing an Advocate" by Kelly Bby SteveI - Huntington's Disease Support Center
Contact Seth Meyer at HDSA. He is the new Community Services & Resource Development Manager. Phone: 800-345-4372 Ext: 240by SteveI - Huntington's Disease Support Center
Mark June 8 -10 2012 on your calendar The 27th Annual HDSA National Convention will be in Las Vegas, Nevada. Steveby SteveI - Huntington's Disease Support Center
It depends on your definition of "major chorea" and the needs of the patient. Some HD+ patients report that the chorea doesn't bother them and some report that they don't even notice it. So in that case since there is always a risk-benefit decision to be made when taking powerful medications. If it's not bothering the patient and it's not severe enough to cause major caregiving or heby SteveI - Huntington's Disease Support Center
This is Marsha, posting on Steve's computer. Twitching at night while falling asleep is entirely normal!by SteveI - Huntington's Disease Support Center
Hi Barb, it's Marsha. We're in Virginia and the Internet Service Provider was down. Steve's working now but we're going home tonight and I'll tell him about your posts.by SteveI - Huntington's Disease Support Center
I agree with Debra about medication. At any given time, about half of HD caregivers are on antidepressants. Depression can be situational but then it becomes biochemical. You want to (quoting Barney Fife here) 'nip it in the bud' so it doesn't become chronic and difficult to treat. As Debra said, your needs change over time. At one point it was helpful for me to chat every morning in the oby SteveI - Huntington's Disease Support Center
I covered this research for HDSA and my update with my commentary can be found here: I have talked to HD researcher/doctors and I haven't found anyone who thinks that that the mouse research applies to adult patients. They've all seen benefits in their patients who have exercised to fitness. The mice in the study have more than 9 times the number of CAG repeats that they should have. Adby SteveI - Huntington's Disease Support Center
Welcome to HDLF. I am sorry for the reason that you are here but glad you found us because I think we have a lot to offer in the form of support and information. I consider us all to be extended family here and there's always room for one more. Here is the most recent data on CAG instability. When the gene is transmitted from the mother, the count is equally likely to contract, increase, orby SteveI - Huntington's Disease Support Center