Families and patients walk together
Published 9:31 pm Monday, September 24, 2018
The Chiari and Syringomyelia Foundation will hold its annual event in Chesapeake at the end of September to help millions of families affected by rare, neurological disorders.
The foundation’s unite@night walk will be held on Sept. 30 at Chesapeake City Park, 900 City Park Drive. Check-in will begin at 3 p.m. followed by the walk at 4:30 p.m. The event is free and open to the public and will also include a host of family activities such as face painting, arts and crafts, a silent auction and raffle.
“It’s really just a time to bring the people together who have had these conditions, their family members and just people from the community,” said walk chair Julie Rauch.
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The event raises awareness and funds for education and research efforts towards Chiari malformation, syringomyelia and related disorders.
According to the press release, Chiari malformation is a congenital or acquired malformation in which the back compartment of the skull is too small, which results in neurological issues. Syringomyelia occurs when a cavity, or “syrinx,” is formed inside the spinal cord from fluid build-up.
They lead to related disorders like dysautonomia, which is a malfunction of the autonomic nervous system, and Ehlers-Danlos syndromes caused by dysfunction of connective tissues. Both can cause chronic, debilitating pain and have no cure as of yet.
“These disorders are complex, and there is no medical consensus on diagnosis or treatment,” said CSF Executive Director Dorothy Poppe stated in the press release. “Patients are forced to be their own advocates, which is exhausting.”
This event brings patients and families together to let them know they’re not alone, a feeling Rauch understands well. She was diagnosed with hypermobile Ehlers Danlos Syndrome after five years of searching for answers, which led her to learn that she had syringomyelia, a tethered spinal cord, intracranial hypertension and other issues.
She’s since had spinal cord surgery, brain surgery and three neck surgeries. Her neurosurgeons are scattered across the East Coast in Maryland, Rhode Island and Pennsylvania. Furthermore, her children have also been diagnosed with EDS and Chiari malformation, and their neurosurgeon is in New York, according to the press release.
Previous walks have funded more than 330 lectures across the country that have reached roughly two million people, and have also funded more than half a million dollars in research projects towards a cure.
“The more people are aware of these illnesses in this area, the more they will recognize things in themselves and get the appropriate treatment,” Rauch said. Her other aim is to have more doctors trained and prepared to treat patients with these conditions. “We really want more doctors in the area to look at these things and understand them.”
Register for the walk at the Hampton Roads unite@night website. For more information, contact Rauch by emailing ZebraAdvocate@gmail.com or calling 650-8247.