My mother has tested positive for HD and is symptomatic and it frustrates me to see that there are so little people out there that know anything about this disease.  You see all sorts of walks/runs/auctions for so many other diseases.  I have spoken with the woman over at the NE HDSA office who puts together the events and apparently they just don't have the volunteers to plan more than they are.  I was wondering if there was anyone out there that would want to help put something together in Boston?

kreilly,

I am very sorry to hear of your husband's recent test results. It is a great thing that you have good support. It will make the long journey easier to bear. A couple of thoughts that I had...if it is not to late and you are able to sign up and attend the all day conference on November 4th it would be a great way to begin networking and meeting people. The other thought is to check out the support groups in your area. They generally are active in different fund raisers. I attend two groups currently. One is in Dover, NH and the other is in Tewksbury, Ma. We have done several fund raisers, as well as, participate in some that have been sponsored by other groups. In December  Dr S Frank is coming to Wentworth Douglass Hospital in Dover, NH to present HD 101. He does a very nice job at presenting facts and answering questions. You are welcome to join us for that (if you are not to far away).

dar