A Cure for Jess

  • Description
  • FAQ
  • Comments
  • Supporters

Imagine one day your otherwise happy and healthy one year old appears clumsy when trying to pick up and eat the blueberries she loves to devour by the handful, the next day she is unable to get them into her mouth and the next day she can no longer pick them up. Eventually she starts to have problems chewing them at all. That is just one of the things Rett Syndrome has taken from our beautiful girl, something we all take so easily for granted because we’ve been doing it since before we can even remember, being able to feed yourself.

We didn’t know at that stage that the hand movements Jess was making were involuntary but we would soon learn what Rett Syndrome was and what it would mean for Jess. She struggles every day to make her body do what she wants it to do. She cannot speak words but her eyes say so much. Her determination and strength inspires and motivates us every day to help find the cure.

All anyone ever wishes is for their child to be happy and healthy. A cure has been proven possible in the lab and with support from people like you we can make it a reality. Please help us bring the cure for Jess out of the lab and into reality. Give her back her freedom and independence. Help us cure Jess, the thousands of others living with Rett and the little girl born every 90 minutes with this debilitating disease.


Please like and follow us on facebook https://m.facebook.com/cure4jess and instagram https://instagram.com/kristenpaintin


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 (26)

  1. Anonymous 
    4 weeks ago
    $100
  2. James Pehl 
    3 months ago
    $250
  3. Drew Kernaghan 
    7 months ago
    $100
  4. Jack Martin 
    7 months ago
    $250
  5. Daycare Rett Syndrome Awareness Day Proceeds 
    8 months ago
    $125
  6. Nyree Hunt 
    10 months ago
    $50
  7. Cindy Byrne 
    10 months ago
    $50
  8. Jason & Suzzanne Khull 
    10 months ago
    $100
  9. Fay Madden 
    10 months ago
    $50
  10. Keryn Jarvis 
    10 months ago
    $20
  11. Anonymous 
    10 months ago
    $30
  12. Cameron Timms 
    10 months ago
    $100
  13. Tom Heaphy 
    10 months ago
    $50
  14. Anonymous 
    10 months ago
    $20
  15. Lesley Walker  
    10 months ago
    $150
  16. Anna Shaw 
    10 months ago
    $25
  17. Alice & Nathan Wooten 
    10 months ago
    $50
  18. Russell Page 
    10 months ago
    $30
  19. Alex & Barbara Paintin  
    10 months ago
    $1,000
  20. Natalie Venables 
    10 months ago
    $30
  21. Sarah Telley  
    10 months ago
    $50
  22. Cherie Kahwati 
    10 months ago
    $20
  23. Cherie and John Crook 
    10 months ago
    $200
  24. Chris and Janine Khull 
    10 months ago
    $1,000
  25. Penny Khull 
    10 months ago
    $100
  26. Kristen & Andrew Paintin 
    11 months ago
    $750

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

Please upgrade today!