A Cure for Everly

  • Description
  • FAQ
  • Comments
  • Supporters

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 (24)

  1. Brian and Kathy Van Zelfden 
    4 days ago
    25
  2. Christina Moss 
    6 days ago
    50
  3. Ryan McElroy 
    1 week ago
    200
  4. Catherine Emberton-Goings  
    2 weeks ago
    25
  5. Eric & Chelsea Haley 
    2 weeks ago
    250
  6. Donna Wielgus 
    2 weeks ago
    100
  7. Jon Boucher 
    2 weeks ago
    250
  8. Mark and Janet Eldridge 
    2 weeks ago
    50
  9. John Gramza 
    2 weeks ago
    100
  10. Jon Boucher 
    2 weeks ago
    100
  11. Rod & Tracy Stevenson  
    2 weeks ago
    100
  12. Neal and Courtney Dieker 
    2 weeks ago
    100
  13. Anonymous  
    3 weeks ago
    2,000
  14. Andrea Reed 
    3 weeks ago
    50
  15. Cheryl Pennell  
    3 weeks ago
    100
  16. Richard Gramza 
    3 weeks ago
    1,500
  17. Erin Heger 
    3 weeks ago
    25
  18. Diane Fulton 
    3 weeks ago
    25
  19. Jenna Pike 
    3 weeks ago
    50
  20. Jessica Hughbanks 
    3 weeks ago
    100
  21. Katie Todd 
    3 weeks ago
    25
  22. Katie Todd 
    3 weeks ago
    25
  23. Jane Deterding 
    3 weeks ago
    250
  24. Ryan & Annie Boucher 
    1 month ago
    2,000

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

Please upgrade today!