Jammin’ for Jaycee

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We love superheroes. Batman, Superman, Spiderman, Captain America, just to name a few. But our favorite superhero is our little girl Jaycee. Her nemesis is Rett Syndrome, which she's been battling since she was 12 months old. She is fighting something that causes her to be trapped in her own body, but she keeps a smile on her face every day. This makes her the strongest superhero we've ever known.

On October 23 we’re holding a band concert fundraiser in Pittsfield, with all proceeds going to the Rett Syndrome Research Trust. We know many of our friends and family live far away and won’t be able to attend. That’s why we started this campaign to go along with our event. If you can’t come on October 23, please consider supporting the research here. Every dollar matters. The research is promising and has even resulted in a reversal of the disorder in mice. Now scientists are getting closer to reversing Rett in children, but they need our support.

Jaycee, like everyone, has good days and bad days. Her good days are spent laughing and smiling. Her bad days are spent being frustrated. Unfortunately, Jaycee can't communicate. She lost the ability to speak and use her arms or hands in any purposeful manner. But we cherish these bad days just as much as the good, because we know that without a cure her symptoms could, and probably will, get worse.

We will move mountains to make sure the resources for finding a cure are obtainable. Funding for this research comes only from us, the friends and families of little girls with Rett Syndrome. Thank you so much for helping us change Jaycee’s life.

Thank you.

God Bless.


Sincerely,

Jaycee Rose's loving friends and family



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 (39)

  1. Christine Zepka 
    9 months ago
    $50
  2. Virginia Company dba Arizona Pizza  
    10 months ago
    $198
  3. Regina Bordeau 
    1 year ago
    $40
  4. Edward Clark 
    1 year ago
    $100
  5. Caitlin Nash 
    1 year ago
    $100
  6. Jennifer Codding 
    1 year ago
    $10
  7. Aaron's Inc.  
    1 year ago
    $500
  8. County Rainbow Taxi, Inc. 
    1 year ago
    $100
  9. WIlliam & Rose Ann Sturgeon 
    1 year ago
    $40
  10. Elaine Lee 
    1 year ago
    $10
  11. Ethel Connors 
    1 year ago
    $100
  12. James & Victoria Kane 
    1 year ago
    $30
  13. James Moore 
    1 year ago
    $25
  14. Bernadette Scapin 
    1 year ago
    $25
  15. Peter White 
    1 year ago
    $100
  16. A.P.W.U Local 3451 
    1 year ago
    $100
  17. Kathleen Samuels 
    1 year ago
    $15
  18. Arthur Roberts 
    1 year ago
    $100
  19. Daniel Reddy Memorial Golf Tournament 
    1 year ago
    $100
  20. Sandra Taylor 
    1 year ago
    $20
  21. Jammin for Jaycee Event  
    1 year ago
    $10,200
  22. Danielle Brennan 
    1 year ago
    $25
  23. john troiano 
    1 year ago
    $25
  24. Charles Wixsom 
    1 year ago
    $50
  25. Louis Eisenman 
    1 year ago
    $300
  26. Paul Milette 
    1 year ago
    $25
  27. Lisa DONOVAN 
    1 year ago
    $50
  28. Louis Eisenman 
    1 year ago
    $300
  29. Aaron's Inc.  
    1 year ago
    $500
  30. Ernie & Carrie Taylor 
    1 year ago
    $800
  31. Perry & Claudia Samowitz 
    1 year ago
    $25
  32. Adam & Tanya Haas 
    1 year ago
    $50
  33. Dalton Police Association  
    1 year ago
    $150
  34. Brian Clary 
    1 year ago
    $20
  35. Richard Petricca 
    1 year ago
    $200
  36. Interprint, Inc.  
    1 year ago
    $50
  37. Mike Coggins 
    1 year ago
    $250
  38. Mike & Tina Stewart  
    1 year ago
    $100
  39. Tim Freeman 
    1 year ago
    $25

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