[www.huntington-study-group.org]

This is a site that shows locations of the testing centers

It's too bad about the requirements of not being able to be on certain medications to be eligible for the trial. I think the low turn out maybe due to that. If they want a phd to participate that is symtomatic but not on the risperdal or tetra for the movements it's hard to find people who are not treating their symptoms. I know my phd would be more than willing to do it and the travel but he's on the risperdal and only is on it to help control chorea and he would be even willing to go off of it for the trial period but 8 weeks prior to the trail period is a lot to ask.



Edited 1 time(s). Last edit at 03/18/2009 04:09PM by LizzieAnn.

I?m sure that you are right. Most pHDs are on some sort of prescription drug. The problem is, of course, that the combination of the two drugs (ACR16 plus another) would cause a faulty result in the trial. Tetrabenazine is a dopamine blocker where ACR16 is a stabilizer, for example, so they would be acting counter to each other.

I wish there were more centers so that travel would not be an issue, but more are being added all the time.

Maggie,
Your story really touched me. You give the meaning to the word marriage. You are so strong for your husband and willing to stand by his side. I once read that marriage equals two people trying to always out give the other, and after I read your posts I immediately thought of that. Thanks again, and please tell tony how much I appreciate him for participating. I am praying for the best for you and him.

Oh Maggie, i loved your story too...did they start Tony on the med yet?

When Jason was four years old, I lost him every time we went to the department store at the mall. He loved to explore and if I turned my head for a second he would be gone. When he got tired of exploring he would find a sales person and tell them, ?Hi, I?m Jason and I am lost. Would you page my mother?? So I would hear over the intercom, ?Would Jason?s mother please come to the shoe department??

Today, Tony is like that. I lose him every time we go to Sam?s and he loves to go so it?s fairly often. I will be walking along talking to him and turn to look at him and he is gone. He doesn?t have me paged though. So, Jason goes to Dallas with us. Dallas is a lot bigger than Sam?s Club. We will go next Wednesday for our appointment on Thursday. There is a good hotel across the street and participants in the trials get a 30% discount. They also have handicapped rooms and we got one of those this time because the bathtub was scary last time. Tony?s brother has nine stitches on his head from a fall in his bathtub when he was taking a shower.

The appointment took longer last time than I originally posted. It was from 1:00pm to a little after 5:00pm. So, we have a reservation for Thursday night, too. It is tiring to do all those tests and then make the 5 hour drive home. This will be the baseline tests, the one that future tests are compared to. I think he will start the med after this trip.

Thanks for the well wishes. Maggie

We called about this trial but my husband is about a year into the 2CARE study and can't be in both at the same time. Our experience in both COHORT (both of us) and 2CARE have been excellent, and we are very grateful to be close to a great COE.

My husband has been very willing to participate for the sake of our 4 kids who are teens and young adults. He resolved at the beginning of this journey that even though this stupid disease had left him and the ones he loves powerless in many ways, his participation in studies and trials was something he could to do fight back and offer the kids hope. Even if it didn't end up directly benefiting him (as might be the case if he takes a placebo for 5 years), he's willing to contribute to the body of knowledge that is necessary in order to REALLY change their future.

As far as getting the word out, keep using all the avenues you mentioned. Support groups are also good resources. They might have helpful lists of people who may or may not be actively involved in the group but may be good candidates. I'm so bombarded with information these days that it often takes several shots for me to actually hear something important. This is especially true for me in the HD world where I can easily experience 'information overload'.

Thanks to everyone for your unique contributions whether it be by participating in trials and studies, riding tractors or walking to raise money for research and support, making calls to lawmakers, writing articles, or sharing your valuable experiences so that others can be encouraged!