The third Annual Walk N Roll for SMA is Saturday at Edith Barill Riverfront Park in Star City. Registration starts at 9 a.m., with the mile walk at 10:30. Online registration is available until Thursday at $20. Registration at the event is $25. Those affected by SMA and children under 2 will be admitted free. There is a military discount.
MORGANTOWN — Caressa Delaney had never heard of Spinal Muscular Atrophy (SMA) until she learned of a young boy in Morgantown who was diagnosed with it. His mother created a Facebook page and Delaney stumbled across it.
That was three years ago and — on Saturday — three Cure SMA Walk N Roll events ago.
“I didn’t know what it was so I started researching to know a little more about it, and the more I started reading the more I wanted to get involved,” Delaney said.
She contacted Cure SMA, looking for ways she could get involved, whether it be donating or something more active.
“I learned that West Virginia didn’t have any kind of fundraiser for it. At first, we talked about raising money like actually putting out coffee cans for pennies and coins at several businesses around, and I actually wanted to do more,” she said.
One in 11,000 babies are born with SMA and one in 50 Americans are genetic carriers. Type I is the most severe and most common, with 60 percent of all cases being type I, which are often fatal early in life. Those affected usually don’t live beyond age 2. There are also types II, III and IV. It is the number one genetic cause of death of children under age 2. SMA affects motor skills and often affects the ability to walk and even breath.
Two members of Cure SMA from Chicago flew in to meet with Delaney to help her get Walk N Roll off the ground in the Morgantown area. Now she has about six people who help her organize what’s become an annual event.
Registration for this Saturday’s event will begin at 9 a.m. at Edith Barill Riverfront Park in Star City.
Every year, Delaney sets a fundraising goal. This year, it’s $15,000, and as of Tuesday they are at 79 percent toward reaching that goal.
On Saturday, participants will receive breakfast as well as T-shirts and other goodies from sponsors. In addition to the one-mile walk, this year Delaney said there will be face-painting, carnival games and a live band.
“We do a raffle tent, which is a big hit. It actually raises a ton of money for the event. It’s basically donated baskets from various companies around the area, or just people who have put together baskets for us,” she said, adding that it’s a lot of fun.
Last year the raffle tent alone raised about $600.
Events like the Walk N Roll also bring awareness to SMA. Delaney believes a lot of people are asking questions now.
She recently attended a wine-tasting fundraiser for Team Winnie, a child with SMA type II. She spoke at the event, and afterward had many people approach her and ask her about the disease, and treatment.
“Now everyone that I know knows about SMA because I talk about it. I’m hoping to get even more awareness to where people are asking to be tested for it, and I want our women’s care facilities around here to provide that option,” she said.
Both parents have to be carriers for the disorder to pass onto a child. Genetic testing is available to see if someone is a carrier, but Delaney said a lot of people have never heard of SMA so they don’t know to get tested.
Cure SMA is leading the research in finding a cure for the disease.
“They have developed a treatment. They know what the disease is. They know what causes it. They know what the symptoms are. They know what it does to kids,” she said.
The treatment, which involves injections into the spinal cord, slows down the progression of the disease. However, a cure has not found. This is what Delaney and others are working toward.
She said the awareness the Walk N Roll brings is amazing, and many local companies are involved. She also said she has pediatricians sponsoring the event.
She really wants more people to learn about it and be tested to see if they are carriers.
“Be aware that this could happen. I think that after you get tested and if both you and your spouse are carriers then you can make an informed decision about how you want to proceed,” she said.