I live in Baltimore, Maryland, USA and my 7 1/2 y.o. step-dtr has HD. She is so curious to learn about other children who live with this disease. The information on the web has really helped, but does anyone know of face-to-face support groups where HD children can meet each other? My husband asked her surgeon’s office about it, and they haven’t heard of any. We would like to get something started, but would like to know if any exist in our area in the meantime. Thank you for all of your input!
We live outside of Hagerstown, MD. My son is 16 months old. He has TCHD. His pull thru was on 4/3/07. I would be interested in the support group.
Please let me know what I can do to help start the support group.
My step-daughter’s doctor is at the University of Maryland Medical Center in Baltimore City. We live in Baltimore County. Her surgeon’s assistant said that she would see what she could get started, but not to expect anything “overnight”. If things don’t get rolling in a decent amount of time, we thought about trying to put something together ourselves. It would be somewhere in the Baltimore County area (I hope that isn’t too far to travel!)
I’ll keep posting updates as they come. Thanks for your interest and support!