About FightSMA

FightSMA is an all-volunteer, parent-led nonprofit, created in 1991 in Richmond, Virginia, with a mission to "strategically accelerate" research to treat or cure SMA (spinal muscular atrophy), the number-one genetic cause of infant death.  It is one of the leading organizations that exist to fight SMA.  FightSMA has funded SMA research at 45 universities and research institutions in five countries. 

FightSMA engages leading scientists and policymakers to create treatments and a cure for spinal muscular atrophy (SMA). FightSMA has been active in the SMA landscape for nearly 25 years and is more optimistic than ever before. SMA has been chosen by the National Institutes of Health to be a model for translational research because it is the closest to a treatment or cure out of all known neurological disorders.

Still, spinal muscular atrophy remains the most common genetic cause of death for young children. Research in SMA also creates invaluable scientific insight for countless other diseases, like ALS, Alzheimer's, Parkinson's, the muscular dystrophies, some forms of cancer and even spinal cord injury.


Our Purpose

FightSMA’s mission is to strategically accelerate the search for treatments and a cure for spinal muscular atrophy. The organization achieves this objective by raising awareness and funding for SMA research.

Our Funding

FightSMA, Inc is a 501c3 tax-exempt nonprofit organization. It relies solely on charitable contributions to equip its innovative research and advocacy programs. FightSMA is fueled by the generosity of individuals from around the globe, through donations made to the organization and fundraiser events. FightSMA also receives funding through annual corporate sponsorships and grant partnerships with other supportive groups. Please note that FightSMA does not receive any state or federal funding.

Our Legacy

In 1991 Joe and Martha Slay created FightSMA, at that time called Andrew's Buddies, after their son Andrew was diagnosed with SMA. For over twenty years FightSMA has funded over fifty scientific institutions around the world. In 2005 the organization began holding its Annual Research Conference in Washington, DC, the only SMA conference of its kind created specifically for researchers.  The unique forum promotes dialogue, debate and collaboration between expert scientists from across the globe to accelerate research towards effective treatments for SMA. Advancing awareness has always been a pivotal part of the organization. FightSMA has brought SMA to the attention of countless media outlets and has been recognized by CNN, NBC’s Today Show, The New York Times, and many others. The organization has seen tremendous progress in SMA research over the past two decades and today, we are more optimistic than ever before.

Board of Directors

Rod Adams

Richmond, VA

Mike Calise

Chairman, FightSMA

Calise & Sons Bakery,
Cranston, RI

Duncan Elliott

Communications Consultant, Cisco
New York, NY
Tampa, FL

Elise Finkner

Secretary, FightSMA

Hargrave Military Academy,
Chatham, VA

Terry Griffin

Eugene L. Griffin & Associates, Ltd.,
Barrington, IL

Deanna Griffin

Deanna Griffin

Board Member since 2015

Shawn Lacey

Shawn Lacey

Board Member since 2015

Tracy Lacey

Board Member since 2015

Joe Slay

Co-Founder and Treasurer,

Slay Communications,
Richmond, VA

Martha Slay

Co-Founder and Past President, FightSMA
Richmond, VA

Bill Strong

Co-Founder, The Gwendolyn Strong Foundation,
Santa Barbara, CA

Kathy Tompkins

Senior Counselor, Strategy XXI Partners,
New York, NY