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Laura Concannon's Fundraiser:

Team Rett Boston Marathon 2012

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Laura Concannon

THE STORY:

RETT SYNDROME ASSOCIATION OF MASSACHUSETTS INC wrote -

Team Rett FundRacers will be raising money for the very first clinical trial of the IGF1 growth hormone currently underway at Children's Hospital Boston in hopes that Rett syndrome can be reversed!

Seen almost exclusively in girls, Rett syndrome is a unique developmental disorder caused by mutations on the X chromosome on a gene called MECP2. A rare disease, the incidence of Rett syndrome is about 1 in 10,000 females. The course of Rett syndrome, including the age of onset and severity varies from child to child. As the syndrome progresses, most children lose purposeful use of their hands and the ability to speak. Other symptoms may include loss of motor skills, breathing and cardiac irregularities, seizures, digestive problems, scoliosis, and tremors.

Although Rett syndrome leaves all girls and women dependent on others for all of their basic needs, tremendous advances in research have been made since the MECP2 mutation was discovered in 1999.

This IGF1 groundbreaking clinical trial, now being conducted by Dr. Omar Khwaja and his team at Children's Hospital Boston, is the first disease-modifying therapy to be tested on girls with Rett. Greeted by an outpouring of enthusiasm from the Rett syndrome community, this trial is giving families enormous hope for a brighter future.

Please support Team Rett in its efforts to fund research that may lead to a cure for Rett syndrome!

 

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MONEY RAISED
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The Team: $116,345 TOTAL RAISED SO FAR

Fundraiser Title

Laura Lewis

Amount Raised

$15,351

Fundraiser Title

Courtney Bonzey

Amount Raised

$9,752

 

195% Raised of $5,000 Goal

Fundraiser Title

Megan Kolendrianos

Amount Raised

$8,250

Fundraiser Title

christina oliver

Amount Raised

$7,765

Fundraiser Title

Kathryn Decelles

Amount Raised

$7,549

Fundraiser Title

Jeanne Troy

Amount Raised

$6,501

Fundraiser Title

Geoff Gillard

Amount Raised

$6,500

Fundraiser Title

Courtney Railton

Amount Raised

$6,225

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