A Cure for Everly

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Our sweet Everly is turning 3 in August, and is a happy, energetic, loving little girl. She loves music almost as much as she loves her baby brother Jack. She has a beautiful smile that would put a smile on anyone's face.

However, this past year we noticed signs that Everly wasn't developing on track. This July, we got the news that Everly was diagnosed with Rett Syndrome. Rett is a rare neurological disorder which randomly affects 1 in 10,000 girls, and causes symptoms of seizures, loss of speech, scoliosis, and takes away the ability to walk. As you can imagine, getting this diagnosis and starting to see the symptoms in Everly has been extremely difficult. It is tough to describe the feeling of not being able to take away her difficulties.

Fortunately for us, that is not where the story ends. We have great hope that there will one day be a cure for Everly. There is exciting research that has the potential to cure Rett syndrome, and greatly improve the lives of Everly and 350,000 other girls and women. The Rett Syndrome Research Trust's strategic plan, Roadmap to a Cure, strives to raise 33 million dollars in 3 years to further the research towards a cure for Rett Syndrome.

This research is not possible without donations from families and friends of those affected by Rett. Any amount given will help deliver results for Everly. We cannot express the amount of gratitude we have for your gifts and prayers!

Ryan and Annie Boucher


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 (30)

  1. Paula Biddle 
    1 week ago
    $250
  2. Dian Blatchford 
    2 weeks ago
    $250
  3. Patricia Christensen 
    3 weeks ago
    $100
  4. Richard Gramza 
    4 weeks ago
    $250
  5. Richard & Elaine Brooks 
    2 months ago
    $100
  6. David & Judith Robinson 
    2 months ago
    $50
  7. Brian and Kathy Van Zelfden 
    2 months ago
    $25
  8. Anonymous 
    2 months ago
    $50
  9. Anonymous 
    2 months ago
    $200
  10. Catherine Emberton-Goings  
    2 months ago
    $25
  11. Eric & Chelsea Haley 
    2 months ago
    $250
  12. Donna Wielgus 
    2 months ago
    $100
  13. Anonymous 
    2 months ago
    $250
  14. Mark and Janet Eldridge 
    2 months ago
    $50
  15. John Gramza 
    2 months ago
    $100
  16. Jon Boucher 
    2 months ago
    $100
  17. Rod & Tracy Stevenson  
    2 months ago
    $100
  18. Neal and Courtney Dieker 
    2 months ago
    $100
  19. Anonymous 
    2 months ago
    $2,000
  20. Anonymous 
    3 months ago
    $50
  21. Cheryl Pennell  
    3 months ago
    $100
  22. Richard Gramza 
    3 months ago
    $1,500
  23. Erin Heger 
    3 months ago
    $25
  24. Diane Fulton 
    3 months ago
    $25
  25. Jenna Pike 
    3 months ago
    $50
  26. Jessica Hughbanks 
    3 months ago
    $100
  27. Katie Todd 
    3 months ago
    $25
  28. Katie Todd 
    3 months ago
    $25
  29. Jane Deterding 
    3 months ago
    $250
  30. Ryan & Annie Boucher 
    3 months ago
    $2,000

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