When my friend, Caren Green, noticed that her one month old baby was not very active, she checked with her doctor and was told the devastating news that Emily had Spinal Muscular Atrophy (SMA). She was diagnosed with type I, the most severe form of SMA. Caren and her husband Jesse were told to take Emily home as at this time there was nothing they could do; lovely little Emily passed away at age four months.
According to Families of SMA (FSMA), a non-profit organization founded in 1984, in the U.S. today there are around 25,000 children with SMA who cannot walk, crawl, roll over, sit without support or even breathe without a respirator.
SMA is the leading genetic killer of children under the age of two. The SMA gene is carried in 1 in 40 people and afflicts 1 in 6,000 babies born. Right now there is neither a cure nor a treatment for SMA. However, research into SMA is moving forward at an accelerated pace, and a cure or treatment for SMA is a realistic and attainable goal.
Locally, the Ohio-Kentucky-Indiana (OKI) chapter of FSMA is hosting its second annual Walk and Roll on Saturday, April 16, at Nisbet Park in Loveland, Ohio. Registration will be at 8 a.m. and the 5k walk/run commences at 9 a.m. A registration fee of $10 includes a t-shirt and refreshments.
John Phillips of 700 WLW will be on hand to emcee the festivities, and all are welcome to join in the fun, including a raffle, face painting, magician, deejay, and more.
For an early registration form by mail call the OKI chapter office at (513)753-8222 or register online at www.fsma.org.
Last year, $33,000 was raised at this event, 100% of which was used towards research for a cure for children like Alex Marshall of Liberty Township. Alex is a six year old with SMA and is confined to a wheelchair. Each week he undergoes hours of therapy in order to keep his body strong for the day when a cure can be found.
He asks questions often of his family and dreams of being able to “play sports and play on teams.”
His grandmother Rosemary Hilston and her family say that it “breaks their hearts when he asks questions and they long for the day when a cure for SMA will become a reality.” Alex is currently participating in clinical trials being conducted at Ohio State University.
For updated information on progress made to date towards a cure and also information on the disease visit www.curesma.com.