Thanks to everyone who traveled to Washington, DC for ALS Advocacy Day. Our familial ALS session was a great success. Dr. Benatar spoke for about 45 minutes, followed by a lively Q&A session. After the talk, we all enjoyed pizza and soda while discussing the special needs of fALS patients and their family members who are at genetic risk for developing fALS. The goal of this more informal aspect of our meeting was to put together a plan for assembling a support group for fALS patients and their families. Consensus seems to be that we need a combination of approaches, including telephone calls, social media technologies such as Facebook, and perhaps the occasional webinar. We agreed that this “virtual” support group should be a grassroots effort, developed and maintained by users of the support group, but with input and assistance from ARC @ Emory. We also agreed that we would try to have the support group meet in person annually in Washington, DC at ALS Advocacy Day.
For familial ALS and general inquiries:
For the CReATe Consortium and related studies:
firstname.lastname@example.org (For familial ALS inquiries)
email@example.com (For CReATe inquiries)
firstname.lastname@example.org (General inquiries)