Yep. I like to remove all evidence of any disasters.by SteveI - Huntington's Disease Support Center
I'm not happy about where it's returning to yet. I'll be working on that.by SteveI - Huntington's Disease Support Center
I finally found the fix needed to have a reply return to normal page. Next I'm working on the smileys.by SteveI - Huntington's Disease Support Center
On Friday, March 11, Senator Kirsten Gillibrand (D, NY) sent a Dear Colleague Letter urging her colleagues in the Senate to become orginal cosponsors of the Huntington's Disease Parity Act of 2011. Take Action Now! We have until Wednesday, March 16, to secure original cosponsors! The Huntington's Disease Parity Act is important for all people affected by Huntington's disease (HD). If enactby SteveI - Huntington's Disease Support Center
Congratulations! Support groups can be a great source of local information. And for attendees that don't live on the internet it can be the only source of HD information.by SteveI - Huntington's Disease Support Center
Agreed Barb. Some posts are more appropriately put on Huffington Post. A large percentage of HDAC members are biting their fingers right now. Particularly me. We have a nice blend of both political parties here. So we discourage trashing the political opinions of others. The intent of this thread was to make everyone aware of the opportunity to advocate. I believe that's been accompby SteveI - Huntington's Disease Support Center
Funding for critical Huntington?s Disease (HD) research faces an unprecedented and immediate threat. Last week, the House of Representatives released a list of proposed reductions to the federal budget including a $1 billion dollar reduction to the National Institutes of Health (NIH). Currently, NIH is the second largest funder of HD research. If the proposed cuts are enacted, HD research will bby SteveI - Huntington's Disease Support Center
HDSA has a social worker in that area that might be able to assist.by SteveI - Huntington's Disease Support Center
Great suggestion. I'll add that to my To Do list. Steveby SteveI - Huntington's Disease Support Center
Thanks for sharing. I'll try this next time I slide into my "zone of mental nothingness".by SteveI - Huntington's Disease Support Center
HAPPY NEW YEAR!!!!by SteveI - Huntington's Disease Support Center
When we do the best we can and we feel we've done a good job then I say to heck with what anyone else thinks about it. It sounds like you pulled off a great Christmas despite the challenges.by SteveI - Huntington's Disease Support Center
I agree with Eric that it's not a great approach to HD advocacy to associate HD with suicide or assisted suicide. However I feel that open discussions on controversial topics are educational and listening to the opinions of others provides useful insight. And geesh, just because I find a topic interesting and worth discussing doesn't mean I'm worried about it. We've had a few lively discby SteveI - Huntington's Disease Support Center
Thanks everyone for your thoughts and prayers. As we are going through our first Christmas season without Marsha's mom it reminds me of how many HD families are going through their first Christmas after having lost a loved one to HD this year. Our hearts go out to those families and we wish them comfort and love during the season and wishes for a better 2011. Steveby SteveI - Huntington's Disease Support Center
It should be fixed now. And Eric I'm always telling my code "Software ... heal thyself!" One must have faith. Steveby SteveI - Huntington's Disease Support Center
I'll work on that tonight. I was hopeful that they would automagically go away.by SteveI - Huntington's Disease Support Center
Early Tuesday morning we had a scammer that registered and sent 135 private messages. I removed the messages but didn't realize that it left the "new private message" flag set. So you can ignore he new private message notification unless you see a message flagged as "New" in your private message email box. Steve Iby SteveI - Huntington's Disease Support Center
It does. Thanks for the additional info.by SteveI - Huntington's Disease Support Center
Thanks for keeping us update BJ. Here are my thoughts. As a concerned parent I would want to have a lot more information about this effort than you've offered. Maybe you can suggest a link to a Web site that provides more information on the players in this effort. I went to www.hdyo.org and found that the site doesn't exist yet. If they haven't purchased the domain name they better do itby SteveI - Huntington's Disease Support Center
Reposted from Jane Kogan at HDSA. Whether you are a Republican or a Democrat, this was an exciting election for the HD Community. Together, we generated over 10,000 letters to Congressional candidates, and received over 180 respondents. Thirty seven of the candidates who responded were elected last Tuesday, which gives us an opportunity to cultivate new allies for the Huntington?s Disease Pariby SteveI - Huntington's Disease Support Center
Optimism I'd like to share one more observation I squirreled away in my database of knowledge. Younger researchers are extremely optimistic. Older researchers are extremely pessimistic (my opion since they would say they are more realistic). However, a more seasoned researcher pointed out to me that the best NEW discoveries are generally the work of younger researchers. Just thoughtby SteveI - Huntington's Disease Support Center
No one likes anyone to disagree with them. But if a person posts a particular position, then they should be adult enough to participate in a dialog about their position without the attitude of "I'm going to punish you by taking my marbles and going home." A disagreement can be easily and appropriately ended by any participating party by simply ending their participation in the threaby SteveI - Huntington's Disease Support Center
It's a generally understood that after a positive diagnoisis the person is going to struggle with depression for at least a year before getting back on their feet. She needs counseling and most likely medication for the depression. She needs support and encouragement. If you can manage to make that all happen then you're a miracle worker. Steve Iby SteveI - Huntington's Disease Support Center
I just wanted to let you guys know that Marsha encapsulated the current state of HD research at the Delaware Valley HD Education Event this last weekend. She was limited to an hour but she pulled it off and did a great job of it. Hopefully everyone attending got as much out of it as I did. Of course, now I need to update the HD Pipeline on the hdlighthouse.org site to reflect her presentaby SteveI - Huntington's Disease Support Center
Who and what is HDAC? If you look at the logo at the top left corner of the page you'll find the text "For HD Families - By HD Families". That is what HDAC is about. The key phrase is "By HD Families". Before we had the message board "HD Families" was limited to Cristy, Marsha and I. Afterwards our family grew as the message board was "adopted" byby SteveI - Huntington's Disease Support Center
Marsha again: Allele specific means that they can silence the HD gene and let the normal one express itself. At first the plan was to silence both in a therapeutic window. In other words administer the antisense drug long enough for the cells to recover from the HD protein but not so long that the brain is damaged by the lack of the normal huntingtin's protein. But allele specific is a wondby SteveI - Huntington's Disease Support Center
This is Marsha on Steve's computer. There were several presentations on antisense therapy. The research is really coming along with advances in effectiveness and safety and Jeff has reported on how it can be made allele-specific. I had no idea this could be done and I am ecstatiC. Another presenter reported that ASOs (antisense oligonucleotides) are now in human patients. Isis Pharmaceuticby SteveI - Huntington's Disease Support Center
You can find them at at the HDSA National Web site at the following URL. http://hdsa.org/index/2010-convention-videos.html Steveby SteveI - Huntington's Disease Support Center
Hi everyone! This is Marsha posting from Steve's computer at the Hereditary Disease Foundation conference. This is very exciting for me because this is where cutting edge HD research is presented and discussed and I learn a lot about what I am going to be writing about in the next year or so. This particular conference is held every two years and reading the abstracts in the program book of reby SteveI - Huntington's Disease Support Center
Dear Friends: Tomorrow morning, Tuesday July 20, from 6 to 7AM Eastern Time, Dr. Andrew Feigin, Director of the HDSA Center of Excellence at North Shore University Hospital, will appear on Doctor Radio, which is available on SIRIUS Channel 114 and XM Radio Channel 119. Dr. Feigin will be interviewed by Dr. Frank Adams of NYU Langone Medical Center, and the topics will center on Huntington'by SteveI - Huntington's Disease Support Center