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Saturday, August 6th at 9am hundreds of children and adults will come together at the Beaver Island State Park on Grand Island 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. 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 9:00am and the walk begins at 10:00am. 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 a 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. Children under 12 are free. For more information on the event please contact Mary Boguhn at 716-984-4233 or meb0810@gmail.com. All funds raised will benefit Families of SMA, a 501 c3 non-profit organization.
About Families of SMA
Families of Spinal Muscular Atrophy (FSMA) 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; educating health professionals and the public about SMA; enlisting government support for SMA; embracing all touched by SMA in a caring community. FSMA's vision is a world where Spinal Muscular Atrophy is treatable and curable.
Families of SMA funds and directs the leading SMA research programs. Successful results and progress from basic research to drug discovery programs to clinical trials provide real hope for families and patients. Families of SMA is a non-profit, 501(c)3 tax exempt organization with 29 Chapters throughout the United States and over 65,000 members and supporters.
Please visit the website www.curesma.org or www.wnyfsma.org for more information on this disease and the organization.
Contacts:
WNY Families of SMA
Mary Boguhn
716-681-2728
Meb0810@gmail.com
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