Brian, Marsha's question directly addressed your issue unless you aren't interested in hearing anything except what you want to hear. The issue of medications, and in particular overdosing on haldol is a serious problem. It astounds me that you're dismissing such an obvious possibility with such a flippant response. Steve Irelandby stevei - Huntington's Disease Support Center
Great feedback. I will add those to my list of elements to include. THANKS!by stevei - Huntington's Disease Support Center
I'll check with Marsha.by stevei - Huntington's Disease Support Center
I believe like many HDSA chapters/affiliates, most information included would be appropriate for any person anywhere. However a state focused newsletter usually also covers events, fund-raising activities just for that state as well as state specific advocacy initiatives. I could be wrong, but I don't believe that HDSA chapters nor affiliates limit their subscribers to just those in that stby stevei - Huntington's Disease Support Center
wine and cheese man....I run a class act.by stevei - Huntington's Disease Support Center
Hello all, I'm now maintaining the hdsatexas.org Web site and am entertaining the notion of a monthly email newsletter to support the various support groups that are operational in Texas and also individuals that do not have access to a local support group. So I was wondering, what would a monthly e-newsletter focusing on Huntington's Disease need to provide for you to go to the effort to sby stevei - Huntington's Disease Support Center
Elizabeth, I'm sorry to hear about your BF. The progression of HD seems to be unpredictable. It's interesting that your BF's brain finds it easier to adapt to rhythmetic prose. My wife and her sister both have HD. One has very little chorea but a lot of denial and/or dementia. The other has no denial and little dementia but severe chorea. Maybe a visit to a speech therapist would be approby stevei - Huntington's Disease Support Center
AWESOME! A little demonstrated success should encourage us to push a little harder. Thanks Stacy. Steveby stevei - Huntington's Disease Support Center
Thanks Eric.by stevei - Huntington's Disease Support Center
And what happened to the Huntington's Disease Association of New Zealand?by stevei - Huntington's Disease Support Center
Does anyone know what happened to the Huntington's Disease Association of Belgium's Web site?by stevei - Huntington's Disease Support Center
ALSO, if anyone knows of any new HD sites that we don't already link to please let me know.by stevei - Huntington's Disease Support Center
Well, it appears that its time for a link refresh. I've been disappointed that Dave's HD Blog didn't make a comeback, so I'm going to remove it from our home page. I was also checking out some of the links to the HDSA chapter sites and found that they too are either dead or possibly relocated. Over the next couple of weeks I'll be cleaning up dead and decaying links. So if anyone knows of linby stevei - Huntington's Disease Support Center
The update on the HDlighthouse is ready. Marsha gave us a bonus by being able to get some thoughts by Dr. Pacifici of CHDI on the research. Just click on the link below.by stevei - Huntington's Disease Support Center
I believe that I'm expected to post something on this as soon as I get home after work. :-) However, we should ALL remember that "Cured in HD mice.." is thrown around pretty freely in press releases by those who have an interest in pushing their agenda. Based on THIS press release we are ALL pretty excited about this, but what we do at the HDlighthouse is try our best to keep thingsby stevei - Huntington's Disease Support Center
Your patience will be rewarded. You may have noticed that I took my original update off the site for the moment. Tonight it will be republished, fully edited and with pictures. And our current plan is to follow this up with the research update - I believe it will be out this weekend.by stevei - Huntington's Disease Support Center
This morning I was advised that a hacker used the chat room to gain access to the ISP that HDAC is now hosted on. Apparently the same low-life scum bag that hacked the HDlighthouse applied the same approach on HDAC. Fortunately the ISP (VVM in Temple TX) is more customer service oriented and told me what happened and how it happened. So, now that it's confirmed that our "free and open sby stevei - Huntington's Disease Support Center
Well, the conference is over and in our opinion it was one of the better ones. Saturday's discussion of the progress of HD research given by James Gusella, Ph.D., Robert Pacifici, Ph.D., and Ira Shoulson, M.D., was as exciting and promising as any I've heard. I overheard one fella in the men's room say that he didn't understand 5% of what he heard, but he understood enough to know that he was waby stevei - Huntington's Disease Support Center
One of the messages that Barbara Boyle laid out in the opening ceremony at the HDSA Conference this year was that although HDSA was successful in raising 25 million dollars in research funding, that we had not yet achieved the "Last Generation" goal. There will be a renewal of that effort at the next HDSA National Conference in Oklahoma. Steveby stevei - Huntington's Disease Support Center
I posted my unedited notes from the opening session of the conference. You'll find it on the home page. More to follow (if I can remember to charge my computer's battery! doooh!) Steveby stevei - Huntington's Disease Support Center
I've been in Rochester, Minnesota this week at an IBM sponsored technical conference. I recently discovered that I'm within walking distance of the Mayo Clinic. I feel healthier already. After today's business conference I'll be driving over to the HDSA conference. No doubt I'll miss the Thursday night's festivities because all of the HDSA bar flies will have retired for the evening by the tby stevei - Huntington's Disease Support Center
PM's are received immediately. There is NO delay in delivery since there is no delivery required. Steveby stevei - Huntington's Disease Support Center
Go to the HDSA Web site and locate a local support group to be involved with. If you're a natural fund raiser the HDSA is always needing assistance with fundraising. A good primer for preparing for self-advocacy was written by Marsha and is available on THIS site at . Sorry to hear about your husband's positive diagnosis, but hopefully we'll have a treatment soon to delay progression.by stevei - Huntington's Disease Support Center
I think that we are going to try to do an "end of day" summary each evening of the major highlights of the conference. But I would like to hear from others about either what we missed or a different perspective on an announcement. Steve Irelandby stevei - Huntington's Disease Support Center
My vote is: Yes - Yes - YES Okay, so I know I voted three times, but I happen to be up in the Northern part of the country this week where voting early and often is very popular. Steve Irelandby stevei - Huntington's Disease Support Center
There is a customizable HD Wallet Card that you can print, cut out and laminate for yourself available on this Web site. Go to Steve Irelandby stevei - Huntington's Disease Support Center
The latest supplements voodoo is now available on the HDlighthouse at: Updated information regarding Omega-3 fatty acids is available by clicking on the Omega-3 link toward the end of that page. Steve Irelandby stevei - Huntington's Disease Support Center
AOL has become a non-service provider for their members who are LISTSERV subscribers (such as HUNT-DIS is). I've resubscribed AOL members dozens of times and watched AOL continue to reject the messages despite pleas from their members to let the messages come through. AOL non-Support is not telling the truth when they say they can't do anything. AOL certainly can do something but they are toby stevei - Huntington's Disease Support Center
The chat room is repaired. There was some minor damage to one of the tables that was easily fixed. This happens periodically and is unrelated to hackers. Sorry for the outage. Steveby stevei - Huntington's Disease Support Center
Therefore I avoid arguing with Marsha at all costs and thereby avoid childish behavior!by stevei - Huntington's Disease Support Center