My Personal Fundraising Page

It's that time of the year when we are finalizing our fundraising for Disney Princess half marathon weekend. Due to covid-19 Disney deicided it was best to turn Princess weekend into a virtual race. As every other Rett family we are bummed that we will not be able to see each other. This does change our mission to keep fighting for our Rett warriors. Even if we will be miles apart we will run as one. Please help me support Girl Power 2 Cure in their efforts to raise funds for research for Rett Syndrome.

Rett Syndrome is a debilitating neurological disorder that predominantly affects females but can affect boys. It is the leading genetic cause of severe impairment in girls, brought on by a single gene mutation that leads to underproduction of an important brain protein.

Kids are born “normal,” but without the protein, begin to lose acquired skills between 1 and 3 years old. Many lose their ability speak, walk or use their hands, and depend on their families for every part of their day. Complications include seizures, sudden death in their sleep and scoliosis.

Despite their physical disabilities, girls and boys with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought. Amidst the mass confusion in their central nervous systems, they are smart, strong, and waiting bravely for us to unlock the door to their recovery. 

Today, there is no cure. But Rett Syndrome is CURABLE! Research has proven once protein levels are back to normal levels, symptoms subside.

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