Voice Box

"The Fire Service adopted the MDA many years ago.  We raise monies within Alabama and across the Nation to support the research to find a cure and to help send affected children to camp.  I was excited to meet with the Honorable Congressman Spencer Bachus, a great friend to the Fire Service, and the opportunity to ask for his support of H.R. 2149 - the Spinal Muscular Atrophy Treatment Acceleration Act."

 - Chief Bill Hewitt, Tarrant, Ala. Fire and Rescue who met with Congressman Bachus on Aug. 4 along with a local family served by MDA, and MDA staff members.

“I want to thank MDA for setting up the meeting & our legislator Dr. Boustany for taking time to speak with us.  The meeting was very important because as Dr. Boustany stated, there is so much legislation that it is very hard to recall all the information on certain bills. Jill [Langlinais]& Mia [Patout] with MDA essentially brought facts & figures about SMA that provided him with good information and reasons to vote for research funding of SMA. I truly hope the result will be to put an end to this very debilitating illness.”

- Francis Schwartzenburg, father of Alyssa Schwartzenburg, a college student who was diagnosed with SMA at age 2.  Alyssa, her college roommate and aide Colleen Keefe, and her dad shared their story during the Fly Out visit with Lousiana Congressman Charles W. Boustany on Aug. 11. 

“The meeting with Representative Tammy Baldwin in Madison was wonderful. The MDA staff explained our roles and then Annie [a young woman who has SMA], charmed the Congresswoman by talking about camp, her friends at camp, and the sports in which she is currently participating. Her mom talked more about Annie's story and how MDA helps and supports them, and the importance of research for families with SMA. Annie did say that she wants to be a mom - I think that comment hit home for Rep. Baldwin."

- MDA staff Roxanne Schimek & Lisa Lodde, about the Aug. 13 meeting with  with Wisconsin Congresswoman Baldwin.