Dear SMA Community,
The past few years have yielded significant increases in federal awareness of and funding for SMA. Our grassroots reach — and national impact — has created critical momentum for SMA research and therapy development efforts; and we are committed to accelerating this momentum in the coming months. Over the past four years, our SMA community has worked cooperatively and collaboratively to achieve this unprecedented level of awareness of SMA and SMA-related research among policymakers and lawmakers. These efforts have brought significant, tangible results:
Looking ahead, the NIH’s involvement and contribution to SMA-related research continues to grow thanks to the establishment of a new NIH program, the “Network of Excellence in Neuroscience Clinical Trials” (NEXT), which will create a clinical infrastructure for neurological disorders. The NIH has indicated that the first research project to utilize the new NEXT infrastructure will be a biomarker validation study of SMA. Identifying a biomarker for SMA would represent a significant step toward accelerating efforts to create effective treatments for SMA. This is the first ever solicitation by the NIH for a SMA-specific research study.
We believe that this recent and continuing increase in support from the NIH is due to the unified federal outreach by the SMA community over the past four years and your remarkable efforts in support of this outreach. It is critical that this harmony be maintained in order to protect gains made and to successfully pursue future advocacy goals.
As you know, the primary focus of our community’s advocacy agenda over the past four years has been the SMA Treatment Acceleration Act. After much consideration of the current political environment and the ongoing SMA-related research activities and opportunities inside and outside the government, we have decided not to pursue reintroduction of the SMA Treatment Acceleration Act at this time. Several goals of the Act have been achieved (e.g., the NEXT network).
But our SMA community is not slowing down and we remain strongly and actively engaged in federal advocacy and public policy through several initiatives that aim to accelerate the development of effective treatments and cures and which will require your continued support and backing:
Please know that your continued involvement and active participation in our advocacy efforts is critical. Much works remains to be done and we will continue to hold Congress, the NIH and other government agencies accountable. We will reach out to you very soon to request your assistance in support of several advocacy efforts that support our ongoing work to identify a treatment or cure for SMA.
Thank you again for your incredible support of our unified SMA community.
|Kenneth Hobby||Annie Kennedy|
|Families of Spinal Muscular Atrophy||Muscular Dystrophy Association|