By Geoffrey Wertime, Staff Writer
MONTGOMERY Van Horne Park will be filled with walkers and hula hoopers this Saturday as they march and spin for a good cause.
The park will be the site of the Second Annual Hoop, Walk ‘n Roll, an event run by six area families to raise money to combat spinal muscular atrophy, a serious genetic disorder. All proceeds will go toward Families for Spinal Muscular Atrophy, a nonprofit organization dedicated to finding treatment and a cure for the disease.
The often-fatal disease destroys the nerves that control voluntary muscle movement, affecting swallowing, crawling, walking, and head and neck control, according to FSMA’s website.
Griffen Kingkiner, 11, is the affected child in one of those families. While his spirits are good and his Type 3 version of the disease isn’t as serious as some others, his mother, Beth Kingkiner, said it still affects his everyday life.
For instance, in the past year Griffen started using a scooter to move around and he now needs a lift to get on and off the school bus. An athletic child, the Montgomery Lower Middle School sixth-grader has also had to change his approach to one of his passions.
”He loves, loves, loves sports but it’s impossible for him to compete with other (nonaffected) kids anymore because he really can’t run anymore,” Ms. Kingkiner said.
But Griffen still gets to compete outside of school, she said. He even won an award Sept. 25 for his performance in javelin, shotput and discus throwing through Wheelchair and Ambulatory Sports USA, and he’s now starting archery with the organization as well.
Ms. Kingkiner said her son also has “fantastic” grades and “a fabulous attitude.”
Although most people have never heard of it, one in 37 people unknowingly carry the recessive gene that causes SMA. The Kingkiner family found out first-hand when Griffen was diagnosed two and a half years ago with the disease. SMA is the top genetic killers of children under 2 years of age.
Along with other local families, the Kingkiners have reached out for the second year in a row to get support from the community for their Hoop, Walk ‘n Roll. Between 9:30 a.m. and noon Saturday, participants will walk and exercise with hula hoops to raise money, and they and other spectators will be able to buy and sample complimentary food. Visitors will also have the chance to purchase raffle tickets and bid in silent auctions for some impressive prizes donated by friends and area organizations.
Much of the auctions’ offerings consists of sports memorabilia, including signed photos of sports greats Don Mattingly, Roger Federer and Tony Hawk; a football signed by Emmitt Smith; and a New York Rangers hockey stick signed by Henrik Lundqvist. Another item up for auction will be an exclusive private wine tour for six in California’s Napa Valley.
Raffle prizes will include numerous gift baskets for items like children’s toys like Webkinz and gift certificates to local restaurants. Tickets will cost $1 a piece, or $75 for 100. Winners’ tickets will be drawn at 11:30 a.m. and the auctions will end at noon.
Ms. Kingkiner said the community has been very helpful in supporting the cause. The Township Committee recently passed a proclamation naming Oct. 9 Spinal Muscular Atrophy Awareness Day in recognition of the upcoming event.
”Each family reached out to different organizations and friends and just told their story about what SMA is, and a lot of people were more than happy to come out and help,” Ms. Kingkiner said.
Last year’s event drew a crowd of about 200 and raised $15,000 for the cause. “We were very happy with our first year to raise that amount,” Ms. Kingkiner said. “This year we’re hoping to hit $20,000, or top it.”
With a cure closer than ever, funding from events such as this are having an effect.
”Now for the first time ever drugs are going into clinical trial that were developed specifically for SMA,” Ms. Kingkiner said. “It’s primarily due to money raised by grassroots organizations like this. Our money goes 100 percent to Families of SMA; we try not to pass on any expenses we have in running it. We try to absorb that all ourselves so everything can go straight through.”
For more information on the event, visit www.hoopwalkandroll.com.
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