patientslikeme.com is a web site supporting several "communities" for various conditions: ALS, MS, etc. While they do have a forum section similar to ours the really big feature is the tracking of the community members over time. Member profiles include items such as symptom onset dates that contributes to a Functional Rating Scale (FRS) that allows members to see how their experience compares to others in their community and what they can expect to see develop over the years. The profiles also track treatments (we can always hope!) by patient plus several other factors.

I contacted the site several months ago and asked about SBMA support and they stated that someone in the SBMA community was working on a profile. Nothing has appeared and I would guess the ball has been dropped.

Recently they have begun an expansion and are soliciting suggestions for new communities. I think it would be a great idea if everyone, including separate submissions by spouses, would visit the site and request support for SBMA.

http://www.patientslikeme.com/welcome/request_community

Hi Bob

This looks interesting. I've visited the site and put in a request for Kennedy's Disease/SBMA support. I know we're a small group, but the more info out there, the better, imho.