ABERDEEN – Chiari Malformation is not a well-known disease, but Jenni Nielsen hopes to increase awareness at the “Conquer Chiari Walk Across America” at the Aberdeen Lake Park on October 27. Jenni was diagnosed 19 years ago with Chiari and her daughter, Skyler, who is now 10 years old, was diagnosed at 10 months old with Chiari as well. This is Jenni’s fourth year as a volunteer in Aberdeen for Chiari and the fourth year she has held a walk in Aberdeen.
Originally scheduled for September 15, the walk was postponed due to Hurricane Florence. Registration will open at 10:00 a.m. and the walk itself will start at 12:00. A light lunch will be provided and t-shirts will be given with a minimum $25.00 donation.
The walk is an annual event. According to the informational flyer, the “Walk Across America is a series of local awareness and fundraising walks held on the same day, uniting patients and their families across the country. Proceeds will be used to fund Chiari research, education and awareness programs.”
So what is Chiari Malformation? It is a serious neurological disorder affecting more than 300,000 people in the US. The bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spinal cord. This can cause many symptoms such as crippling headaches, neck pain, balance problems, trouble breathing, numbness and weakness in the limbs. It can strike children or adults.
There has been very little research on Chiari and the underlying cause, diagnosis and treatment are unclear.
To register for the walk, contact Jenni at jennisrockingeckos@yahoo.com or (619) 248-2783.
Conquer Chiari is a 501©3 public charity dedicated to improving the outcomes of Chiari patients. The Chiari website, www.conquerchiari.org has a lot of information about the disease. If you have questions you can contact the Executive Director, Rick Labuda at director@conquerchiari.org or (724) 940-0116.
