Senator John Kerry (D-MA) gave a speech (click here to view Senator Kerry's speech) at the 2008 Families of SMA (FSMA) Conference in Boston, MA this past week and announced that he has signed on as a cosponsor to the SMA Treatment Acceleration Act (click here to read more about the Act) that will provide Federal support to SMA non-profits focused on turning SMA into a treatable disease. So far 60 members of the House of Representatives and 18 senators have also signed on. This is a very important step to getting us closer to finding a treatment and a cure for SMA.
Families of SMA is a dedicated non-profit focused on advancing research and supporting families impacted by SMA. We reached out to FSMA almost immediately after we learned of Gwendolyn's diagnosis in April 2008. They provided support and continue to help us gather knowledge of new ways to care for Gwendolyn. We would have loved to have been able to attend the conference but, unfortunately, Gwendolyn is unable to fly at this point so getting to Boston would have proven a bit tricky from Santa Barbara. Maybe next year!