About FightSMA

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.

NEARLY 25 YEARS IN, FIGHTSMA IS STILL LEADING THE FIGHT FOR TREATMENTS AND A CURE.

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.

Staff

Alicia Grolbert

Program and Office Administrator

Danielle Chan

Director of Marketing and Operations

Board of Directors

Bill Strong

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

Dan Hayden

Management Consultant, FightSMA

Independent Management Consultant,
Cambridge, MA

Duncan Elliott

Communications Consultant, Cisco
New York, NY
Tampa, FL

Elise Finker

Secretary, FightSMA

Hargrave Military Academy,
Chatham, VA

Joe Slay

Co-Founder and Treasurer,
FightSMA

Slay Communications,
Richmond, VA

Kathy Tompkins

Senior Counselor, Strategy XXI Partners,
New York, NY

Martha Slay

Co-Founder and Past President, FightSMA
Richmond, VA

Mike Calise

Chairman, FightSMA

Calise & Sons Bakery,
Cranston, RI

Rod Adams

LeClairRyan,
Richmond, VA

Terry Griffin

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