My daughters are hosting a Hoopathon in upper new york state. I am PHD
We would like some ideas because we would like this to be a success because this is the lst one in our area. Thanks for the help.

Nora, do you have an HDSA chapter there? They have just created a national data base the chapters can access to share fund raising ideas and successes. I would give them a call and see if they can direct you.

Hi Nora-

You should get in touch with BJ Viau in Apple Valley, MN. He gave a great talk at the recent World Congress on Huntington's Disease in Vancouver about how he and his family have mastered the art of staging hoopathons. It was very inspirational. I don't want to publicly post his email without his permission but if you send me an email at robi.blumenstein@chdifoundation.org I will put you in touch with him.

Thanks for your efforts!

Robi

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

Thank you Eric. I missed spelled HDAC it should be HDSA in Rochester, NY. They are supplying the T-shirts and they have given us a few suggestions but we would really like to make it fun for the toddlers also and make it family friendly.

I am a patient at the Albany Med. Center of Excellence. We do not have a chapter in Albany but I think we would like to try to start one. In Jan. they began having support meetings where only a few attended. At our last meeting we had over 30 attending. We have met some very nice families that are going through the same thing that we are.

Thanks for the welcome.

Nora

It sounds like you are connecting up well then. That's good thing. I have been trying to be more involved too. You have good awareness in your family which is a good place to start. It's also a good example to set for other families. That way all those self aware families can take it to the community and make them aware so on. This isolation stuff is for the birds. It drove me half crazy. We had a corn hole tournament here in Indiana. It's not our biggest fund raiser but it is fun. And it's nice to see HD families having fun. It did make a profit as well... so it was win-win. Personally I did spectacularly awful. But who cares? I was practicing with a gent who had HD and he did better than I did. I said "I need to take what you are taking." He laughed and said "Yes you do." Now where else can ya fit in a little HD humor?..

Thank you again for the information. Perhaps next year it could be a corn hole tournament and I can guarantee you would win.

My daughters are very frustrated because of the lack of information on this disease. My daughters are all "at risk" and I also have 2 adorable grandsons also "at risk".That is why we have posted a site where you can read our story www.firstgiving.com/upstatenyhoopathon


Nora

I would definantly contact BJ. His speech at the congress was fantastic and very inspiring...and he mentioned in his speech that he is more than happy to talk to people about their fundraisers etc. He really was great!
Good luck!