Run’n’Roll to Cure Rett

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My name is Trenton Read and I am the father of 3 girls aged 5-11 years old. My second daughter's name is Addison and she is 8 years old. She has atypical Rett Syndrome. Whilst this is her primary diagnosis, the complications that go with this syndrome are severe, life limiting, unpredictable and there is no cure.

But this description is not Addison. Addison is the bravest, sweetest, happy little girl you could hope to meet. She rarely gets upset, lives for engagement with her sisters and family and loves to try anything that the other kids can do, if we can assist her to do so. She loves swimming, animals, getting outdoors and going for walks and jogs with her Dad.

Addison has been through hell in her short life. Her respiratory issues mean she ends up in hospital with pneumonia when she gets the slightest cold and she has endured breaking both her legs at the same time from something as simple as trying to stand with assistance. Despite all her seizures, lung problems, broken legs, swallowing issues, inability to sit up or walk or  use her hands, she is a very smart little girl and a happy little angel trapped in a body that just doesn't work. But through all this, she finds a smile that would melt an iceberg and demonstrates her indomitable spirit.

Addison loves it when I push her fast in her wheelchair. So, I’ve decided to push myself and let her experience the atmosphere of the 12km HBF Run for a Reason. My Reason is simple: I want to Cure Rett Syndrome for Addie and everyone worldwide effected by this disease and I truly believe this will happen. If I can make a 12km run, with your support, we can make it happen!

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 (40)

  1. Anonymous 
    2 weeks ago
    $10
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    2 weeks ago
    $50
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    3 weeks ago
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    4 weeks ago
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    4 weeks ago
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    4 weeks ago
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    4 weeks ago
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    4 weeks ago
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    1 month ago
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    1 month ago
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    2 months ago
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  22. Anonymous 
    3 months ago
    $250
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    3 months ago
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    3 months ago
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    3 months ago
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  26. Anonymous 
    3 months ago
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    3 months ago
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  28. Michelle Lang 
    3 months ago
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  29. Trent Read 
    3 months ago
    $100
  30. Maddy Stephens 
    3 months ago
    $50
  31. Belinda Civiletti 
    3 months ago
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  32. Lincoln Read 
    3 months ago
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    3 months ago
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    3 months ago
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    3 months ago
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    3 months ago
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  40. Nicols Richardson  
    3 months ago
    $40

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