Is there any members here that attend the NC HD Reach support group or had any contact with the orginazation?

I know the folks involved with it. They're doing an excellent job. I'm an annual contributor to them. Here's their website: [hdreach.org]

Will

I hate sounding so perstemistic, but in what way are they helping? I am about an hour SE of Raleigh and do not have the luxury of time to attend thier monthly meetings ( I have not had the time to visit MY cardioligist in two years!)

I have emailed the recent Director about having a dynamic internet presence in addtion to just a static website with an accumlation of links. from the reply it sounds as if there is a large active community but you are the only online aquantance I know that is aware of NC HD Reach

Joe

Joe,

I don't attend regular support group meetings either (due to the evening times), but they are well attended. They're in the process of starting a new group in Winston.

Here's an example involving me. Shortly after HD Reach was started, I visited a Drug Discovery Lab at Duke run by PhD Dr. Don Lo, who is one of two founders. Dr. Mary Edmondson, a Raleigh MD with wide experience with HD, was the other. There was a special guest on that visit, Charles Sabine. Charles is a delightful person who has dealt with his HD diagnosis with class and humor.

Both Don and Mary are glad to help in any way they can. Mary is a psychiatrist who specializes in HD, since it's in her family. Don is a HD research and drug discovery expert. Both can be reached through info@hdreach.org Mention my name!

Will

I have only tried calling NCHD Reach a few times, and just left message.
I do get email once a month and a call from an operator reminding me of meetings.

I think I would like to have communications with Dr Edmondson as her credentials seem impressive

I have gone to Mary Edmondson and she was completely rude to me. Pete was there so he can confirm that it happened. I don't think she knows anything about HD. And that is the reason I don't go to HD Reach because I know Mary runs it. The neuro that works with her was also rude to me.

After that experience I started going to Dr. Francis Walker at Wake Forest University Hospital in Winston Salem. When I asked Dr. Walker for a psychiatrist in the Raleigh area he recommended someone else.

I have only taken the wife to Duke once back in 2008, the visit didn't help. I thought at that time Duke needed some one other than a movement disorder to see HD patients.

we took her sister there many years prior and at least that neuro was better, however his advice was not to come back.

I just have been wondering what HD Reach does and if any thing that would be of benifit for us

All,

I'm sorry to hear those things about HD Reach. I do know Dr. Walker at Wake - he's my ENROLL person. He and his staff are wonderful.

Will

I think hd reach is a joke because they have never contacted me.