Senator Ranzenhofer & Mayor Byron Brown declare September Chiari Awareness Month in their districts Submitted by Agnes Starr | Jul 8, 2013, 5:08 AM SHARE: Chiari affects over 300,000 people in the US. Chiari is a serious neurological condition in which the brain herniates through the skull putting pressure on the nerves and spinal cord disrupting the normal flow of cerebrospinal fluid flow causing debilitating pain and life threatening symptoms. Many people with Chiari also have or develop Syringomyelia which is the development of a syrinx (fluid filled pocket in the spine) that can lead to paralysis. The only treatment right now is a risky brain surgery that often fails and needs revision after revision or worse. There is no permanent cure. Many people are not familiar with Chiari as other conditions such as Cystic Fibrosis which in comparison affects approximately 30,000 in the US. Very little research and funding has gone into this life changing condition and The Conquer Chiari Walk Across America is making strides to change that. In 2010 Agnes Starr, with the help of many friends and volunteers, organized the first Conquer Chiari Walk in the WNY Area. At that time there were only 31 walks across the country. In just 3 years the number of walks has over doubled to 63 and growing. In 2 years the local Conquer Chiari Walk raised over $43,000 towards research and with a combined effort these walks helped open the first Chiari Research Facility in the Country at the University of Akron in Ohio. These walks also fund several grants and an annual conference bringing top doctors, surgeons, and researchers together to discuss their findings. Mayor Byron Brown and Senator Michael Ranzenhofer joined the effort this year signing proclamations declaring September as Chiari Awareness Month in their districts. This year the Buffalo Walk will again take place at Ellicott Creek Park in Tonawanda on Saturday September 21st. Registration begins at 11:00. Walk starts at 1:00pm The Buffalo Walk Activities include: Live Music by the bands Hair Nation, Turbulence, music by Signature Entertainment, Sponge Bob Square Pants Appearance compliments of Showbiz Entertainment, Facepainting by the Amherst YES Group, Tonawanda YES making Balloon Animals, Kenpo Self Defense Demos, Firetrucks courtesy of Ellicott Creek Fire Co., Large Basket Raffle, 50/50, Food, Refreshments, and Guest Speaker Dr. Lee Gutterman from Buffalo Neurosurgery. If you are interested in sponsoring and or joining us the day of the walk. You may become a corporate sponsor, pre-register to walk, sponsor a walker, or learn more at conquerchiari.org. Be sure to choose the Buffalo NY Location from the drop down menu when sponsoring and or pre-registering. Walkers that pre-register before 8/16 with a $25.00 or more donation will receive a walk shirt and food ticket. Corporate sponsorships to be named on the walk shirts are still available through the end of this month. If you are interested in becoming a corporate sponsor or would like to donate an item to the basket raffle you may contact: Agnes Starr RDH, BS (Buffalo/WNY Conquer Chiari Walk Across America Walk Site Organizer) [email protected] or 716-691-7717
Posted on: Wed, 10 Jul 2013 05:27:48 +0000
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