Woman With Rare Disease Plans Walk/Roll To Find A CurePosted: Updated:
A Gouverneur woman with a rare spinal cord disorder called syringomyelia is raising money to find a cure. She's hosting a fundraiser walk this weekend.
Jessica Griffith says she knew something was wrong with her lower body about three years ago.
"I just woke up one morning in November of 2014 and I had weak and heavy legs."
After five days of pain, Griffith went to the emergency room.
"I had an MRI three days later and I was diagnosed with syrinx running through my entire thoracic cord," she said.
Griffith has syringomyelia, a rare disease causing muscle weakness, limb soreness and even paralysis.
"A hole forms inside of the spinal cord and then the cerebral spinal fluid seeps and fills it and it can elongate and widen," she said. "It can damage the nerve within the spinal cord."
About 100,000 Americans have syringomyelia. So in 2016, Griffith put together Jessica's Walk and Roll for a Cure. It also supports the fight against chiari, a similar disease typically found in infants.
"Between syringomyelia and chiari, there are over a dozen people just in Gouverneur that have these diseases, one or the other," she said. "I do know one person that has both chiari and syringomyelia."
Griffith raised nearly $5,000 last year. The money supports the American Syringomyelia and Chiari Alliance Project.
"They're dedicated to education and support for patients and doctors," Griffith said. "They provide funding for research projects, as well."
Jessica's Second Annual Walk and Roll for a Cure will be held Sunday, August 13 at the Gouverneur Fairgrounds.
Registration begins at 10 a.m. and the walk starts at 11 a.m.
There will be a DJ, food truck, Elvis impersonator, bake-off competition, face painting, animal balloons, mini petting zoo, kids' games, silent auction, and many vendors.
You can find out more and sign up for the walk at this website.