Raising money for an important cause at Beaver Island State Park

GRAND ISLAND - Hundreds of children and adults will come together at the Beaver Island Park on Grand Island at 9 a.m. Saturday, Aug. 4 to have fun, and more importantly to raise money to find a cure for Spinal Muscular Atrophy (SMA). Some people will walk, but others will be pushed in their wheelchairs or use motorized chairs because they are living with SMA.

SMA is a genetic disorder that affects voluntary muscle movement. Children and adults with SMA slowly loose control of the muscles that allow them to crawl, walk, even swallow or breathe. Some quick facts about SMA:

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 no cure for SMA, but there is hope.

Approximately 400 people will be participating in the 3-mile walk and festivities at the 9th Annual SMArt Walk for a Cure.

Among the events scheduled to take place are: music, face painting, clown, basket raffle, 50/50, and food and refreshments. Registration for the event is at 9:00 a.m. and the walk begins at 10:00 a.m.. Events will continue until 2 p.m.

“We never knew about SMA until our daughter was diagnosed,” said Mary Boguhn, WNY FSMA Chapter Correspondent. “She started losing her ability to hold her head up at five-months old and was never able to stand or sit on her own. After many appointments with specialist, we learned our daughter had a muscle wasting, auto-recessive disease called Spinal Muscular Atrophy. Due to her weakened respiratory status, Jenna started on several respiratory machines such as the bipap, cough assist, and nebulizer treatments. She soon lost her ability to swallow and went through surgery and a feeding tube was placed. Although there is no cure for this disease, we have hope. Families of SMA is funding research that is bringing us very close to a treatment for this disease. We know that our efforts in organizing this effort may help bring that day closer.”

Currently Families of SMA is funding clinical trials of a possible treatment for SMA. FSMA is also funding several drug discovery efforts that we hope will lead to a novel treatment for this disease.

Funds raised at this event will help sustain those programs as well as promote better understanding of SMA and provided invaluable support for families living with SMA.

There are more than 7.5 million carriers of the genetic risk factors for SMA gene in the US alone, and the disease SMA affects approximately one in every 6000 live births. SMA is usually diagnosed when babies are less than 18 months old, although certain types of the disorder can appear in later life.

Adults are $15 per person. For more information on the event, contact Mary Boguhn at 984-4233 or meb0810@gmail.com.

All funds raised will benefit Families of SMA, a 501 c3 non-profit organization.