Brief SSDI questionnaireThis message was forwarded to me. It was sent to the HDSA Chapters Presidents by Sean Luis, the new Advocacy & Family Service Manager...
I remembered to follow up! The second article about the Jackowski family from Illoinois is published on the Daily Herald news today! Another fantastic...
Thanks to the hard work of the Northwest Chapter of HDSA President, Liz Weber and their board, a Tribute Concert to Celebrate the lives of Woody and Marjorie...
Herb, I'm very sorry for your loss. You and your family will be kept my prayers. ALL, As you may or may not remember my dad (not a pHD) died this past April....
Rhonda Holscher
sawedoffrunt69@...
Oct 8, 2007 9:02 am
292
Wanted to say thank you to everyone for your support, prayers, and shared stories. I don't remember who asked, but yes Caleb does know his doc. wants him...
Rhonda Holscher
sawedoffrunt69@...
Oct 9, 2007 1:50 pm
293
Hi. My mom died in December of 2004. Her chorea became quite severe before her died. My question is, before the movements start, do patients experience any,...
If you have a few minutes, please check the messages out on the HD Map Where We Live. There might be someone you can related to who even lives in the same...
If you were a member of Hunt-Dis, or even a little further back the AOL HD Chats, you'll remember our friend, Julie Sando, who was a member for many, many...
For those living in the CT or NY area's, MRSA is not something to mess with and to have it found in the public schools is outright scary! If you have family...
The 2007 World Congress on Huntington's Disease was held in Dresden, Germany in September. I learned this morning on the HDAC forum that they have the entire...
As always, when I post something about the HD Map and people looking to communicate with others in their neighborhood, or going through the same HD situation...
I'm sharing the HDAC request with everyone with their permission! ======================================================== There are so many thoughts and...
Thanks to a friend, the below report was brought to my attention yesterday. As the person who sent it to me said, "this document is very readable in layman's...
Don't we all wake each day with the same thought [hope/prayer] in our hearts/mind that this will be the day the headline will announce "A Cure for Huntington's...
The HD Lighthouse has reviewed the below document and their comments are now posted. A BIG THANK YOU to the HDL editors, Marsha Miller & Steve Ireland, for all...
Once again the HDL is on-top of the latest research news! The HDL commentary on be below RNAi news release has been published: siRNA helps a viral transgenic...
Today the full US Senate approved the S.1710 Bill containing support for access to taxpayer funded research [my birthday gift I'm sure]! The HDAC has an...
Our own [HDSA NYA and Hoop-A-Thon] Billy Aaron Brown is starring in the world premier of the Headless Horseman on the SciFi channel this weekend. So break...
The below message from Nancy Wexler was forwarded to me. The FDA will be reviewing Tetrabenazine's safety on December 6, 2007. Nancy is urging any patients...
For any young people 9 through 30 living in Northern California, mark your 2008 calendar to attend the NEW Youth Support Group meeting in January. Print out...
Well some New Yorkers and others throughout the country recently were able to attend both the Annual Guthrie Dinner and the first annual Woody & Marjorie...
As most of you know the FDA will have a hearing for Tetrabenazine [TBZ] on December 6, 2007. This hearing will be a Open Public Hearing which provides...
Sorry, I won't post anything else on this subject until after the meeting, I promise! The only reason I'm posting this one is because it gives the mailing...
Probably one of THE most important studies being done in Huntington's Disease [besides PREDICT HD] is the Huntington's Study Group's [HSG] COHORT Study. Why? ...
This was posted on-line yesterday. For anyone participating in the DOMINO study or taking Minocycline, it's important you read the below HDSA coverage. I'm...
What's a little more nuts to an HD family? Well it appears eating them can help! The Society for Neuroscience recently had its annual meeting and the HD...
If you belong to Hunt-Dis and you use the archive link to read messages [like me] or are on Digest and haven't received your digest from yesterday, there is a...
Can We Get There From Here? The Huntington's Disease Community's Strategic Plan for the Cure My computer's working again! Part II of the above series of...
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