Bentley's Smiles for Miles, on behalf of Cure SMA, announced their 2nd annual 5k in honor of Bentley Bassamore who’s life was cut short by spinal muscular atrophy in late 2007 at just 18 months old. The race, organized by Bentley’s mother, Carie Whitaker, will begin at the Main Street Stage in Pikeville on May 30 at 8 a.m. The event aims to raise awareness, fund research and continue the fight against spinal muscular atrophy, which is currently without a cure.
“SMA is the number one genetic cause of death in infants and before my son was born I had never even heard of the disease,” Ms.
Whitaker, said. “Our goal in hosting this race each year is to honor Bentley’s legacy, to help fund research and to educate the public about something that has a tremendous affect on so many people, yet so little is being done to combat this disease.”
Officials said, "Across the state, there are currently 84 documented SMA patients. Due to the current prognosis, these numbers fluctuate all to often. Most of these children travel to receive care in either Knoxville, Nashville or Chattanooga but rely on the support of their local communities which have rallied to find a cure, much like Bentley’s Smiles for Miles is doing in Pikeville, Tn."
SMA is a disease that debilitates physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. Approximately 1 in 10,000 babies is affected and 1 in every 50 Americans is a genetic carrier for SMA, which makes no preference for race or gender.
After losing her son Bentley to SMA 18 months post-diagnosis, Ms. Whitaker, volunteered to host this annual event in 2014. Last year Bentley’s Smiles for Miles 5K raised over $9,000.
Cure SMA serves over 4,000 families each year through support services from a network of over 110,000 people across the country and has invested over $57 million in research which funds two-thirds of the 15 ongoing SMA drug programs to help cure SMA.
Registration for Bentley's Smile for Miles is now open. To register, create a team, join a team, volunteer, donate or sponsor the event, visit
www.events.curesma.org.