Hundreds of children and adults will come together for Jacob’s Run, Walk & Roll to Cure SMA
Boynton Beach residents Shaina and Adi Rappoport have served as the event organizers since 2002 when their son, Jacob, passed way from SMA (Spinal Muscular Atrophy) related complications. Jacob was nine months old.
By: Families of SMA
“We had never heard of SMA, but now we have pledged our lives to fighting this horrific disease” said Shaina. “We have chosen to do this to honor our son’s memory.”
SMA is a genetic disease that affects voluntary muscle movement including those that control the ability to crawl, walk, swallow and breathe. Intellectual activity in adults and children affected by SMA is normal and it is often observed that patients with SMA are unusually bright and sociable. Other facts to consider:
• Spinal Muscular Atrophy is the leading genetic killer of children under the age of two;
• One in forty people carry the gene that causes SMA;
• SMA can strike anyone of any age, race or gender;
• There is currently no treatment and no cure for SMA.
Families of SMA has made significant progress in advancing new therapies for SMA, starting with funding the first ever SMA drug program in 2000. The organization is aiming to fund two new preclinical drug development programs in 2011, with more to follow. These multi-million dollar collaborations will focus on innovative methods of developing novel therapies for SMA, including both biologic and small molecule approaches. Having multiple “shots on goal” provides the best potential for reaching the objective of a treatment and cure for SMA.
Approximately 600 people will participate in the 1 mile fun run/walk and everyone is welcome. Family friendly activities taking place before and after the event include music, costumed characters, games with prizes, face painting and refreshments. Registration for the event is at 8:30am and the walk begins at 9:30am. Events will continue until 1:30pm.
Registration for the event is $25 for adults (over 18) and $10 for children (2-17). For more information on Jacob’s Run Walk & Roll to Cure SMA, please contact Jennifer Chaput at (800) 886-1762 or email@example.com.
# # #
Families of Spinal Muscular Atrophy is dedicated to creating a treatment and cure by:
- Funding and advancing a comprehensive research program
- Supporting SMA families through networking, information and services
- Improving care for all SMA patients