Run to Reverse Rett for Isla

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Dear Family and Friends of Isla,

On October 7, I’ll Run to Reverse Rett at the Steamtown Marathon in Scranton, PA. Please support the search for a cure, support Isla, and support me. Together we raised over $25,000 last year!

Isla has Rett Syndrome, a rare genetic neurological disorder that leaves her incapable of controlling her body with intention. Isla is unable to speak, crawl or walk, eat a normal meal by mouth, or use her hands purposefully. Fortunately, Isla is incredibly sweet, happy, resilient, beautiful, and loves to laugh! She CAN understand us and she wants desperately for us to understand her too.

Isla is making progress, learning to use an eye-gaze controlled computer to develop her ability to communicate. We are very hopeful and cautiously optimistic about research and clinical trials underway to find a biological cure for Rett. Unfortunately, since Rett is so rare, research is significantly underfunded, and we need to fill the gap.

Please contribute to the fight to Reverse Rett!

THANK YOU!

Sean, Stephanie, Isla, Owen


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 research to a cure 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.

In 2017 RSRT launched a three-year, $33 million strategic plan called Roadmap to a Cure. The plan prioritizes four scientific approaches that attack the disorder at its genetic core and offer the possibility of a profound reversal. Roadmap to a Cure is the only comprehensive plan ever developed by any organization anywhere to advance a cure for Rett Syndrome.

By funding the most Rett research worldwide, $58 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

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  1. Mariemmi & Richard Pozzuoli 
    5 months ago
    $100
  2. Shashi Karia  
    6 months ago
    $100
  3. Theresa Pondok 
    9 months ago
    $30
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    9 months ago
    $100
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    9 months ago
    $50
  6. Elizabeth Singh 
    10 months ago
    $25
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    10 months ago
    $25
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    11 months ago
    $50
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    11 months ago
    $100
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    11 months ago
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    11 months ago
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    11 months ago
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    11 months ago
    $500
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    11 months ago
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    1 year ago
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    1 year ago
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    1 year ago
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  90. John Carter 
    1 year ago
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  91. Cormac Cullinane 
    1 year ago
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