Hi all-

The recent news about the trial of Dimebon in Alzheimer's disease as reported by Barb, Marsha and others was disappointing.

However, Huntington's disease is NOT Alzheimer's disease.

The Phase 2 DIMOND study showed that Dimebon may have a beneficial effect on cognition in HD patients.

NOW, MORE THAN EVER, IT IS IMPORTANT FOR THE HD COMMUNITY TO COMPLETE THE HORIZON TRIAL SO THAT THE QUESTION OF DIMEBON'S EFFICACY IN HUNTINGTON'S DISEASE CAN BE ADDRESSED.

The last thing WE want is for sponsors like Medivation and Pfizer to throw in the towel on HD because because they cannot count on US to help them get OUR HD trials done, especially in the face of discouraging news from another indication.

If you, or someone you know might be eligible to participate in the HORIZON trial please get in touch.

In North America contact the site nearest you (even if it's not so near!): [www.huntington-study-group.org]

In Europe please call Jenny Naji at the European Huntington?s Disease Network on +44 7791 985313 or email najijj@cf.ac.uk.

Thanks, and please feel free to pass this message around!

Robi

Robi Blumenstein
CHDI Management/CHDI Foundation
robi.blumenstein@chdifoundation.org
www.chdifoundation.org

I agree with ya Robi. This one does have evidence through a good phase II trial for HD. And you can't have a safer medication either. Plus the exclusions is hardly anything so you don't have to stop taking things to participate. If they were all this easy. And no HD is not AD. Mementine actually failed an AD trial itself at one point. All the trial proved is certain dosages at a certain frequency wasn't effective. Change those and it may be.

My husband signed up for the Horizon trial this week. We were told the phase 2 trial for HD looked promising. I like that fact that when the study is over in 6 months the drug becomes open label. My husband and I are very pro-clinical trials and he has participated in 3 trials. People need to participate in clinical trials to find a therapy or a cure for HD. At least I can say that my husband has fought the good fight for himself, our child, and for others with HD.

The HD community can either do something or do nothing, I know which one will bring us treatments quicker.

[www.hdyo.org]

Hi Debra-

That's great! A big thanks to your husband and you.

Robi

Robi Blumenstein
CHDI Management/CHDI Foundation
robi.blumenstein@chdifoundation.org
www.chdifoundation.org

You're welcome

Hi Robi,

Thanks for keeping up the drumbeat about study participation. Debra, thanks to you and your husband as well.

Karen, my wife, has been talking to Johns Hopkins' nurse study coordinator about PREQUEL. She has been impressed by their thoroughness in that they are talking to UVA-COE about her visits there as a patient(we both participate in COHORT, btw) as well as the nurse is looking to Karen's records from Hopkins in the early/mid 90's when she underwent gene testing for free and participated in a study at that time which included neuropsych testing, MRIs and PET scans.

Info about PREQUEL can be found here: [www.huntington-study-group.org].

For those of you that follow Hunt-Dis email list, I hope Jimmy P. can tolerate the acronyms in this thread! BTW, Jimmy is speaking at Wisconsin HDSA conference which looks like it is April 17 in Milwaukee: [www.hdsawi.org]. I remember the Milwaukee Athletic Club as being a pretty nice place when we attended a cousin's wedding there back in the 90s.

If you have never heard Jimmy speak, he is not to be missed!

Take Care,

Tim