Senator Kerry joined the Families of SMA via video for their recent conference, and praised them for their incredible work to find a cure for spinal muscular atrophy and to support the victims of this childhood disease. He also shared with them that he's signed onto Sen. Debbie Stabenow's legislation to "... authorize the Secretary of Health and Human Services to conduct activities to rapidly advance treatments for spinal muscular atrophy, neuromuscular disease, and other pediatric diseases ..."
According to the text of the legislation, spinal muscular atrophy (SMA ) is the number one genetic killer of children under the age of 2, and occurs in nearly 1 of every 6,000 births. The bill seeks to appropriate funds and accelerate the fight for these children on a number of fronts, including education, research, implementation of a clinical trials network, and establishment of a coordinating committee to oversee federal agencies' efforts and report back to Congress.
Video Credit: FamiliesofSMA1
The mission of Families of SMA is to advance research and support families by :
* Eradicating SMA by promoting and supporting research;
* Helping families cope with SMA through informational programs and support;
* Educating the public and professional community about SMA.
The Families of SMA and Senator Kerry ask you to urge your Senators and Representatives to support The SMA Treatment Acceleration Act (S.2042 and H.R.3334). There is a donation page at the SMA website.
