Our Story

Henry Cho on one knee, embracing Evie, who sits in her tiny manual wheelchair.

In June 2008 Jeff and Dee Horton discovered that their daughter, Evie, had Spinal Muscular Atrophy. Few people that they talked to about SMA had ever heard of the devastating disease. Even many in the medical profession were not familiar with SMA.

But then neither were the Hortons. “After you learn about the symptoms and the surprising stats of how common it is, you begin to understand how awful the disease is, what it does to children and their families. However, you keep digging and you realize how close we are to possible treatments,” Jeff recalled.

So we ask: what if SMA was well known and supported like other diseases? What would the treatment possibilities be like then? To the Hortons, the equation was simple:

Awareness + Support = Treatments

Jeff and Dee desire the highest quality of life for their daughter. They want to be able to tell her, when she is old enough to understand, that they did everything they could to ensure she had a healthy and full life. So with this goal in mind they decided to become advocates for all families facing SMA and change the prognosis of this disease forever.

In July 2009, Jeff and Dee started the appropriate paperwork and began a new journey. A journey to stop SMA.

Our Family


  • Jeff Horton, President

  • Dee Horton, Vice-President

  • Letitia Kennedy, Secretary

  • Carrie Walker, Treasurer


  • Will Edwards

  • Chris Graham

Ex Officio Members

  • Dr. Jay Allen

  • Jackie Granberry

  • Cortney McDonald

  • Russell Shaw

Board of Directors

  • Toby Butler

  • Heatherly Edgar

  • Jessica Eubanks

  • Tobi Fulcher

  • Mary Margaret Hickman

  • Jess Hinton

  • Matt McDonald

  • Dr. Clyde Muse

  • Jason Pope

  • Glen Silverman

  • Sharon Silverman

  • Darryl Sims

  • Mark Stanton

  • Brad Stevens

  • Laura Walters

  • Blake Watson

  • Jason Webb

  • Congressman Gregg Harper
    Honorary Board Member

Photo of Ashley Warren, Blake Watson, and Letitia Kennedy at Laugh Away SMA 2011
Ashley Warren, Blake Watson, and Letitia Kennedy