Affecting over 300,000 people nationwide, Chiari malformation is one disorder that is gaining interest which is why Dover resident Vonda Maxwell has decided to take the word to the streets, hosting the Conquer Chiari Walk Across America in Lithia.
Taking place on Saturday, September 20, with registration beginning at 8 a.m., the walk will start at the FishHawk Sweetbay located at 16751 FishHawk Blvd. in Lithia at 9 a.m. From there, participants will walk a total of four miles along the bike paths in FishHawk, arriving at FishHawk Fellowship for free water and then returning to Sweetbay.
Chiari malformation, which can be detected through magnetic resonance imaging (MRI), occurs when the cerebellum descends from the base of the skull, causing pressure to one’s spine. Due to this, its victims can have dizziness, migraine-like headaches, neck pain, severe weakness in one’s extremities and respiratory issues. It can also lead to a disruption in the flow of cerebrospinal fluid, creating fluid-filled cysts on the spine known as syringomyelia. These cysts can cause nerve damage and even paralysis.
Maxwell, along with her mother and three daughters – Bryanna, 10, Mckenzie, 8, and Gabriel, 7 – suffers from the neurological disorder, with two of her daughters having syringomyelia as well. “It is very personal to me,” comments Maxwell. “I had a desire to do something,” she says which is how the walk came to fruition here in FishHawk. “This is the first year for the walk, and its goal is to span 50 states,” having been originated by the C&S Patient Education Foundation, also known as Conquer Chiari, a nonprofit organization formed in 2004 which is aimed at providing funding for the diagnosis and treatment of the disorder.
“Although Chiari is not well-known, it affects about the same number of people as MS [multiple sclerosis] in a similar way. It is our hope that an increased awareness of Chiari will help people when they are diagnosed. Also, there is not much research on Chiari which, of course, we would like to change,” states founder and Executive Director Rick Labuda who says the walk has already landed 20 sites across America with hopes of thousands joining the ranks of walkers.
Residents are invited to take part in the walk with a minimum donation of $20. Those who pre-register online before August 15 and include a $20 donation will receive a T-shirt. There is a need for walkers, walker sponsors and corporate sponsors for the event. Maxwell is hoping for 100 walkers as well as to raise over $1,000 for the cause that touches so close to home for her and her family.
For more information, call Maxwell at 393-9012, her sister Nancy at 393-8333 or Carey at 393-8570. If you are unable to participate in the walk and would like to contribute to the effort, log onto www.conquerchiari.org, clicking on the “Conquer Chiari Walk Across America: Sept. 20, 2008” icon and then the “Online Sponsor Donation” icon, entering information for the Lithia, Florida walk. This site also provides patient information as well as a bi-monthly newsletter on current Chiari research.