California Supports SMA AwarenessAugust 29, 2010 by Victoria
We've been so busy working on the "$200K for SMA" campaign that we completely forgot to update about the other wonderful things that have been happening with Spinal Muscular Atrophy awareness and advocacy this month.
The State of California Declares August SMA Awareness Month --> This took a lot of planning, reaching out, and following up, and we are so excited that the California State Legislature officially declared August "SMA Awareness Month." We'd like to thank Senator Tony Strickland from District 19 (Santa Barbara, Ventura, Los Angeles) for taking the time to help make this happen. We love this and Gwendolyn thinks the official proclamation is very fancy!
City of Santa Barbara Declares August SMA Awareness Month --> For the second year in a row, the City of Santa Barbara recognized August as "SMA Awareness Month." Thank you Mayor Helene Schneider and members of the City Council for taking the time to acknowledge the need for increased awareness.SMA Treatment Acceleration Act --> Along with another SMA family, we were invited by the Muscular Dystrophy Association (MDA) to meet with Representative Lois Capps' office about the SMA Treatment Acceleration Act. Capps has always been an early supporter of this bill, but given her unique position on the Energy and Commerce Committee, we hoped that she would be encouraged to get more involved and use her influence to help push the SMATAA over the finish line. The meeting was a big success and we left with promises of increased support and reaching out to her colleagues. *And if you haven't checked lately, PetitionToCureSMA.com has reached over 95,000 signatures! Yay! It continues to be an effective tool for both the larger advocacy groups like the MDA, FightSMA, and FSMA and for families when meeting with legislators. We are more than happy to provide unique constituent data to any family meeting with their Reps. Just send us an email. We want this bill passed!