I am reaching out to people in the New England area once again to let you know about the research being done here in New Haven, at the Institute for Neurodegenerative Disorders (IND).

For many years IND has participated in Huntington's Disease research mainly as a member of the Huntington Study Group.
Our goal at IND is to develop methods of brain imaging to better understand changes in the brain that occur as the result of neurodegenerative disease.

Currently we are using brain imaging to study a specific brain receptor that appears to be affected by Huntington's disease.
As we all know, the hope for Huntington's disease is in research. We are in need of people who have been diagnosed with Huntington's disease to participate in research. I am very interested in speaking with anyone who may be interested in participating or who may know someone who is interested.. Please e mail or call the number below. Costs of travel, food and lodging will be covered by the study. A stipend will also be paid for your time in participating.

I would also be glad to talk with you in more detail about the research study or pass this on to anyone you may see fit.

Thank you,
Barbara Fussell RN
Director of Outreach
The Institute for Neurodegenerative Disorders Molecular NeuroImaging
60 Temple St., Suite 8B
New Haven, Ct 06510
Phone 203 401 4345 or 800 401 6067
Fax 203 789 8037
bfussell@indd.org<mailto:bfussell@indd.org>
www.indd.orghttp://www.indd.org

I've passed this along to my Dad who lives in Vermont.

It would be good to reach out to to Laurel Lakes care facility in Massachusetts and Crescent Manor in Bennington, VT as they have special populations of HD patients.

My daughter lived at Laurel Lake and they fought us every inch of the way when she wanted to be in a clinical trial. They went as far as engaging a lawyer who thankfully agreed with us. Their excuse at the time was simply "we don't do clinical trials here." For the five plus years that she lived there my daughter was the only patient to participate in a trial. My daughter has since moved home and hopefully their attitude toward clinical trials has changed.

If you ever hear of a study "down south", please let me know. In my genealogy quest I've come across 16 confirmed pHD's, with at least 32 at risk over 5 generations. All of the oldest generation have passed on. I find this somewhat uncanny to have so much in one family. You would think that with a 50/50 chance, there wouldn't be as many.

Greeneyes, I'm a bit confused, thought I posted a reply but apparently didn't. Thought I sent a PM and apparently didn't.

There is a COE at Kirkland Clinic in Birmingham and UT is affiliated with a facility in Memphis. I had one visit to Birmingham and wasn't particularly pleased. A couple here at home goes to Memphis and they see Dr. Ladue. I have spoken with them and they were pleased. Both facilities were enrolling not long ago.

Mike



Edited 1 time(s). Last edit at 02/01/2013 07:08PM by mikee.

Ok I sent 2 emails to get info on the trials and also tried to fill out there online registration. seems neither one works to get a response. Never get an answer back from emails. The online registration doesn't work. you get all the way to the end then you have to enter the strange letters in the box. Well no letters to put in the box. I would love to help them. I live in Vermont and only a few u=hours away from there site