PITTSBURGH - The Duquesne rowing team will take part in the sixth annual Rettsyndrome.org Pennsylvania Strollathon this Saturday, Aug. 31 at Millvale Riverfront Park. Rettsyndrome.org is an organization that focuses on funding research and providing support to families with children with Rett syndrome.

The DU rowing program is directly affected by the disorder as Kaley, the 10-year old daugher of head coach Jenn Langzettel, was diagnosed with Rett syndrome at the age of two and a half. The Strollathon is Rettsyndrome.org's signature fundraising program held at more than 25 locations across the country over the past 17 years.

Rett syndrome is a neurological disorder caused by a genetic mutation in which the brain does not produce enough of a protein to allow the neurons to fire properly. It affects 1 in every 10,000 females (and occurs even more rarely in males) and begins to display itself in missed milestones or regression at 6-18 months. Rett syndrome leads to severe impairments, affecting nearly every aspect of life: ability to speak, walk, eat and breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements while awake. Cognitive assessment in children with Rett syndrome is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions.

Head coach Jenn Langzettel: "Our daughter Kaley was diagnosed with Rett syndrome at the age of 2 and a half. Kaley never reached certain milestones in her development but had learned how to feed herself, was able to play with toys, and have meaningful interactions with others. Kaley is now 10 years old and needs maximum assistance in all of her daily activities. She is unable to sit or stand without assistance, and is unable to walk. She also receives all of her primary nutrition through a tube in her stomach and is on multiple medications to manage seizures. In the spring of 2019 Kaley was hospitalized for 28 days, in and out of the ICU for pneumonia which caused heightened seizure activity. During this time she was on a ventilator multiple times. Prior to being hospitalized Kaley had been able to receive almost all of her nutrition via a pureed diet, but has since been unable to regain her ability to swallow properly and is only able to enjoy small snacks for pleasure via mouth. 

There have been some great strides in Rett syndrome research and there is hope that it will be the first neurological disorder to be cured, hopefully in Kaley's lifetime.  Each girl is affected differently and there is no set life expectancy for those affected by the syndrome.  Women have lived long lives with the disorder while some have passed away at a very young age." 

Your donation will help fund important research and family support. This cause is very important to me and I appreciate your help as we fight for a cure for Rett syndrome!

Please join me or donate to my efforts to support www.Rettsyndrome.org in finding a cure! Your help is our hope!

Registration for Saturday's event begins at 9 a.m. with the Strollathon starting at 10:15 a.m.

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To donate to the Kickin' It With Kaley Strollathon or for more  information - CLICK HERE