EDS – Chiari Walk & Run in Milford, CT
EDS – Chiari Walks are being planned for EDS Awareness.
Here is a well-organized walk that received newspaper coverage in Milford, CT.
The original article is printed in the May 13th Edition of the Citizen News.
Article and Photo by Alicia Sakal.
Jackie Stager is a smart, talented, and spirited young teenager with plenty of dreams, hopes, and aspirations just like any other 14-year-old. When she is feeling well, Jackie is an A+ student at Marvelwood High School and is a gifted singer for SingOut! CT, a local pre-professional chorus. She would also love to act again at Fineline Theatre.
What makes her different from most teens; however, is that she lives many of her days with chronic pain and physical limitations because she suffers from Ehlers-Danlos Syndrome, Hypermobility Type (EDS-HT), a genetic connective tissue disorder, and Chiari 1 Malformation (CM), a life-threatening condition in which her cerebellum is slipping through the opening of her skull, disrupting normal brain stem function.
In order to raise awareness and support research for both disorders, and to also raise money for Jackie’s medical expenses; Jackie’s mom, Eloise Stager, is organizing the First Annual JaxLegacy Race for Ehlers-Danlos and Chiari, and this event will take place on Saturday, May 23rd. So, mark your calendar for a fun, entertaining event with something for everyone to enjoy, no matter what age and ability!
About the Race
The start time for this “run, walk, or roll” 3K and 5K benefit race is 9 a.m. and it begins at Veteran’s Field in Sherman. The 5K race will have a cross-country component and “almost” anything goes… Aside from running or walking, participants can walk with strollers, or roll with wheelchairs; athletes and non-athletes with adaptive equipment are welcome to participate. Ribbons will be awarded for each category, age, and gender. Above all else, everyone is encouraged to wear crazy outfits, especially zebra gear, to enliven the race and entertain the many spectators!
For registration details, visit: http://fasttracktiming.com/races/5232015-run-for-ehlers-danlos-syndrome-and-chiari/ You can also register the day of the event. Everyone who registers will receive a free t-shirt, water and light breakfast food, including baked goods from American Pie Company. This event will take place rain or shine.
Community Event Highlights
Before, during, and after the race, there will be tons of festivities taking place at Veteran’s Field from 9 a.m. to 12 noon. Throughout the event, Don Lowe and Al Burgasser will be entertaining the crowd with their live musical performances, and the Master of Ceremonies will be Bill Buckley, friends, and local talent.
When the race is over at 10 a.m. there will also be a special, fun-filled “6 and Under Dash” for the little ones. Then, a light fare, community picnic, will follow.
T-shirts, awareness bracelets, water and light food will be available with a donation to non-race registrants.
As for the Silent Auction, there will be plenty of selection to choose from like gift certificates to Play, Daffodil 6, Tasty Waves, and many more. Plus, tickets to the Fineline Theatre Arts Spring Dance Fest, one of Jackie’s favorites. You do not need to be in attendance to win.
Post Event Gathering
The party will continue at 1st and 10 Sports Bar and Grill in New Milford. If you can’t make the event at Veteran’s Field, then please join us. The Silent Auction and Raffle will take place at 4 p.m. at 1st and 10. Ten percent of all sales will go to JaxLegacy. Special thanks also to Images Unlimited for supplying the t-shirts and to 1st and 10 Sports Bar and Grill.
Did You Know?
The Month of May is Ehlers-Danlos Awareness Month for Sherman, as declared by First Selectman Clay Cope. Nationally, May is EDS Awareness Month and June is Chiari Awareness Month. Governor Malloy also signed a proclamation for May as EDS Awareness Month in Connecticut.
There are six types of EDS, and Hypermobility and Classical Types are the most common. According to a UK study, only 5% of sufferers are correctly diagnosed. It’s more common than people think and it is estimated that 1 in 5,000 people worldwide have EDS. As for those who go undiagnosed or misdiagnosed due to physician oversight or lack of knowledge about EDS, the estimate is 650,000 sufferers a year in the U.S. To have a combination of EDS and Chiari the current estimate is 1 out of 1 million; however, evidence is mounting to suggest it’s more prevalent.
According to the National Institute of Neurological Disorders and Stroke, “Chiari Malformation Type, which may not cause symptoms, is the most common form of CM and it is usually first noticed in adolescence or adulthood, often by accident during an examination for another condition.”
A portion of the proceeds from this event will also go to the Connecticut Zebras Ehlers-Danlos Support Group that Mrs. Stager founded and it is 84 members strong. Jackie is the Co-Director and Children’s Ambassador for this support group as well. In addition, a percentage of the profits will also go to the Chiari and Syringomyelia Foundation (CSF).
More Ways to Help
If you would like to volunteer by standing along the route to help assist, distribute food, or pass out t-shirts, or would like to make a Silent Auction donation, then please call Mrs. Stager at 860.367.2926 or email her: firstname.lastname@example.org
If you cannot attend this event, but would like make an online donation, then please visit: www.gofundme.com/JaxLegacy or mail to: Eloise Stager, 4 Main Street, New Milford, CT, 06776. Make checks payable to: JaxLegacy.
You can plan your walk by contacting Cathy Poznik unitenight@CSFinfo.org
Learn more at: www.csfinfo.org/csf-unite-night/.
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