Fundraiser for Chiari Malformation patients to be held Saturday in Mt. Pleasant
People from all over Pennsylvania will gather at Mammoth Park in Mt. Pleasant Township on Saturday to raise money and awareness for a little known disorder that affects an estimate one in 1,000 people each year in the United States.
Chiari Malformation is a serious neurological disorder where 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 spine.
The condition causes many symptoms including but not limited to: severe headaches brought on by coughing or sneezing, extreme pain in neck and shoulders, trouble swallowing and sometimes speaking, respiratory problems and sleep apnea, loss of bladder or bowl control, loss of fine motor control, weakness, stiffness and pain in arms and legs, balance problems, numbness and sometimes inability to feel hot and cold in hands and feet.
“Hopefully one day we will find a cure without the need for repetitive neurosurgery,” Chiari state representative and co-organizer Tracy Lowanse said. “There is no cure for Chiari. The only thing you can do is remove the back part of the skull to make room for the brain.”
Lowanse of West Newton has 18-month-old twins that have Chiari Malformation as well as Ehlers-Danlos Syndrome which is an inherited connective tissue disorder.
“My daughter has sleep apnea and stops breathing at night and my son falls down all the time,” she said.
She and her friend Kelly Moore of Dunbar have organized this first time local event to raise money and awareness about this little known condition.
“It's a very good cause. It is not very well known and even health care officials are not aware of this condition,” Moore said.
The Saturday event is the first locally but is part of the Conquer Chiari Walk Across America, a national event that is in its sixth year. The annual fundraising and awareness event is comprised of a series of local walks held on the same day. Last year's event was held at 53 different locations, involved more than 8,500 participants, and raised more than $530,000. The local event already has 111 walkers registered, Lowanse said.
“The event has been more of a success than I could ever have imagined,” Lowanse said. “I'm proud to say I have already raised $6,000.”
The walk will take place on Mammoth Park's one-mile walking track. Participants can walk as many laps as they want or are able to.
Registration for the event begins at 11:30 a.m. with the walk scheduled to begin at 1 p.m. There is no registration fee to walk. “You can just show up and walk. If you want to give a donation we are happy to accept but it's not necessary to walk. The more the merrier,” Moore said.
In addition to the walk there will be activities for the kids including face painting, raffles, a bake sale and a jewelry sale. Every participant will also be eligible for door prizes.
People are traveling from all over Pennsylvania to participate in the event. Lowanse said one reason is the event gives families affected by the syndrome an opportunity to share information with one another.
“Chiari is so rare. I have had people crying to me because they are so happy they are going to get to meet other families going through this,” she said.
Those who would like to contribute but are unable to attend the walk can send checks payable to Conquer Chiari to C&S Patient Education Foundation, Attn: Rick Labuda, 320 Osprey Court, Wexford, PA 15090.
To donate online or get more information on Chiari, visit www.conquerchiari.org. For more information on the local walk call 724-787-1938.
The event is sponsored nationally by Southern States Toyota/Florida Lift Systems and locally the signature sponsor is the Mensha Corp.
Linda Harkcom is a contributing writer.