Swim for Brynn

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Hi, my name is Sophia and I am becoming a Bat Mitzvah this month and for my Mitzvah project I’d like to help raise awareness about Rett Syndrome and funds to support research that is leading to a cure for this devastating disorder.

A few months ago, thanks to Mrs. Ferraro at my school, Mr. Connor and his daughter Brynn were able to come visit and talk about Rett Syndrome. I was aware of Rett Syndrome but hearing more about it and meeting Brynn was deeply moving and inspired me to help. Rett Syndrome is caused by a genetic disorder and is a debilitating neurological condition that could be treatable or cured with gene therapy. The genetic disorder is caused when part of the X chromosome is missing. Almost all girls with Rett Syndrome survive because they have at least 1 complete X chromosome. But because part or all of the other X chromosome is missing, the brain doesn’t get the nutrients it needs to carry out every day functions. Fortunately, the Rett Syndrome Research Trust raises money to support research and has made a difference. Some research has already shown dramatic symptom reversal in mice and the Rett Syndrome Research Trust has developed the Roadmap to a Cure, a 3 year, $33 million plan to fund the research that could lead to a cure. Since 2008, the Trust has awarded $47 million to research with 96% of every dollar donated going directly to research.

Since meeting Brynn, I’ve learned that we share a common love of swimming which is why on April 21st, 2018 I will swim 20 laps to raise awareness and money which would go toward funding research to find a cure.  Please help me reach our goal of raising $5,000 by donating on my fundraiser page and be part of Swim for Brynn.


What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.

Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world's premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

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    6 days ago
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