Two or three years ago HDSA announced a study using CoQ10 and some other med to be tested on HD sufferers. I haven't heard anything more about it. Has anyone?

The CARE-HD study (involving CoQ10 and remacemide) is ending up right now. The results are expected in early 2001.

CoQ10 delays onset and slows the progress of the disease in HD-mice so I am hoping we will hear that it does the same for people.

Creatine also helps the HD mice and clinical trials will be starting for people shortly. At the recent HDSA convention, doctors cautioned that there is no evidence that creatine will help people and that even assuming it would, we don't know what the optimum dose would be. In the HD mice, too much was worse than not enough.

A lot of people are naturally interested in CoQ10 and creatine but it's really best to talk to your doctor about it.

Another ongoing clinical trial is with riluzole, a drug which has had modest effects in delaying the progress of disease in ALS patients.

There is so much research going on and so much progress that I feel very encouraged.

My mother is in the study. After a couple of months without any medicine (when the study ended officially), she has started in their open label testing of ramacemide. The study involved both CoQ and ramacemide.

She will continue in this open label study for at least two years, I think. It's our belief that the ramacemide is helping. When certainly noticed the difference between the time she was and wasn't taking it. She seems to have more stability in her gait...enough to be noticeable.

salt