Dear SMART Friends and Supporter:


We hope this finds you healthy and safe during these challenging times. As you may know, patients with Spinal Muscular Atrophy (SMA) and related neuromuscular diseases are amongst the most susceptible to the severe consequences of respiratory infections like the coronavirus, so we fully appreciate the anxiety and uncertainty with which many of you may be struggling. At the same time, the COVID19 pandemic is a timely reminder of the critical importance of the work of biomedical researchers, including those that SMART supports, as well as our amazing 1st responders, including the Buffalo Fire Professional Fighters Local 282 who so avidly support us. Both are essential to how we tackle the challenges of life-threatening diseases.


Over the past 11+ years, we have been blessed with your support and your extraordinary generosity in raising over $2 million to fight SMA. Our funding of Dr. Charlotte Sumner at Johns-Hopkins University and a number of her collaborators at Harvard, University of Delaware, and elsewhere has led to an improved understanding of the molecular basis for the disease and potential alternative treatment approaches to enhance other therapies. In partnership with Cure SMA, we’ve supported researchers at Columbia University to understand modulators of disease manifestations and others at the University of Rochester to develop new clinical measurement tools to assess the potential benefits of new treatments. Together with the Children’s Hospital of Philadelphia Foundation, we’ve been able to support the legacy of Dr. Robert Campbell whose orthopedic innovations have changed the course of disease for many kids, including our buddy Matthew Reilly (SMA Type2). You, our SMART supporters, have accomplished this and much more with your actions and your generosity. Those and the extraordinary advances from other researchers whose work led to 2 new approved drugs for SMA in recent years give us confidence that we can and will beat this disease for generations that follow.


However, because these are challenging times, we acknowledge that this is not the most prudent or appropriate time for 2021 SMART. Therefore, we have made the difficult decision to cancel this year’s annual SMART fundraising event. We share your disappointment but also know this is the right thing to do. We are committed to continuing our efforts in the future and we will be back bigger than ever in 2022.


We will continue to support SMA research efforts and will do so to the best of our abilities, absent our annual event. There are no expectations, but given the generosity of so many of you, we would of course welcome any who are willing and able to continue with a donation in 2021 – tax-deductible donations are always welcome simply click here. We will continue to use your generosity to drive new areas of SMA research because SMA patients, whose daily struggles are further impacted by the COVID19 pandemic, are looking to us for the hope that comes with new scientific advances.


Thanks again for all that you have done and will continue to do to combat SMA and related neuromuscular diseases. We will miss seeing all our supporters this year, but be well…..be SMART….and we’ll be back!


With admiration and well wishes,

SMART Board of Directors



 Remember that together, we will find a cure!



SMART Has a 501c status(Tax ID# 32-0284955) making all donations tax deductible. SMART does not solicit by telephone!!