2019 Run to Reverse Rett for Isla

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On August 18th I’ll Run to Reverse Rett at the Peasantman 72.3 mile steel-distance triathlon in Lake Keuka in the Finger Lakes.

Please support the search for a cure, support Isla, and support me. Together we’ve raised over $50,000 for Rett Research over the last two years! Last year we made the news: Reverse Rett - Steamtown Marathon - News Clips

Isla has Rett Syndrome, a rare genetic neurological disorder that leaves her incapable of controlling her body with intention. She is unable to speak, crawl or walk, or use her hands purposefully. But Isla is so much more capable than we can see, and there is exciting research and clinical trials underway that promise to unlock her capabilities by building the brain-body connection that is missing due to Rett.

Unfortunately, since Rett is so rare, research is significantly underfunded, and WE need to fill the gap.

Isla is incredibly sweet, happy, resilient, beautiful, and she loves to laugh! She CAN understand us and she wants desperately for us to understand her too.

Isla is making progress as she learns to use her eye-gaze controlled computer to develop her ability to communicate, and she’s getting physically stronger too, standing (with support) for longer periods of time and sometimes able to sit by herself without falling over.

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.

Supporters (59)

  1. Judy Wong 
    4 weeks ago
    $100
  2. Brigid Doyle 
    1 month ago
    $100
  3. Christian Homlish 
    2 months ago
    $50
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    2 months ago
    $50
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    2 months ago
    $100
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    2 months ago
    $100
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    2 months ago
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    2 months ago
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    2 months ago
    $500
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  59. Andre Brandt 
    2 months ago
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