Everything for Ellie

  • Description
  • FAQ
  • Comments
  • Supporters

Ellie is magical. She is a happy, sweet, loving and active little girl. She has a spark in her eyes and once you make that very special “Ellie connection” you’ll feel like your heart will burst. She loves to go on adventures and travel. Especially to Hawaii! Ellie loves to swim, play with friends, swing, jump, read books and run. She is fast! Especially fast for a little girl with Rett Syndrome. Ellie is one of the lucky ones. A lot of girls with Rett Syndrome can’t walk or run. With your help it won’t be forever.

On Sunday, June 10th, I’ll be running the Seattle Rock and Roll 1/2 Marathon for Ellie and for all the Rett kids that can’t. With your help by donating to our fundraiser you will get them one step closer to a cure so they can run too. One day I dream of running a race with my girl. Maybe it will be a race with all the Rett girls that couldn’t walk but because we never stopped fighting and raising money for the research they will run. It WILL happen but we need your help. Every dollar you donate brings us one step closer to breaking them free from Rett Syndrome and giving them freedom to run as fast as they can!

My goal is $10,000! With your help I know we can do it!


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 the development of treatments and cures 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.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (13)

  1. Anonymous 
    1 month ago
    $5
  2. Jenny Donner  
    3 months ago
    $50
  3. Kelly Nolan Shafer 
    4 months ago
    $50
  4. Louella Hanson 
    4 months ago
    $50
  5. Christy & Harley Donner 
    4 months ago
    $500
  6. Robert Kaelin 
    4 months ago
    $100
  7. Margaret Connolly 
    4 months ago
    $100
  8. Brian Feiden 
    4 months ago
    $100
  9. Anonymous 
    4 months ago
    $1,000
  10. Kenneth Donner 
    4 months ago
    $50
  11. Lara Lant 
    4 months ago
    $100
  12. Cynthia Mundhenk 
    4 months ago
    $50
  13. Kristin Gellert 
    4 months ago
    $100

This is a unique website which will require a more modern browser to work!

Please upgrade today!