Jammin’ for Jaycee 2018

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Jaycee is a 4 year old little girl that has been battling Rett Syndrome since she was 12 months old. She is bubbly and has an amazing personality and when she laughs and smiles it brings sunshine to the cloudiest of days. Jaycee like everyone else 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 has lost the ability to speak, walk, and use her arms and hands in a purposeful manner. She also has to have all of her food puréed and is unable to feed herself. We cherish these bad days just as much as the good days, because we know that without a cure her symptoms could and probably will, get worse.

On June 16, 2018 we are hosting an event in the form of a pig roast/ picnic  called “Jaycees Roasting Rett For A Cure”. This event will have live entertainment, food, raffles and a fun filled day with all proceeds going to Rett Syndrome Research Trust. We will also be holding another event on October 14, 2018 in Pittsfield Mass at Tavern at the A in the form of a band concert called the 3rd Annual Jammin' for Jaycee's Fight for a Cure. Again with all proceeds going to Rett Syndrome Research Trust. We know many of our friends and family live far away and will not be able to attend. That’s why we started this campaign to go along with our event. If you are unable to attend our event on June 16, 2018 or October 14, 2018 please consider supporting research here. Every dollar matters. RSRT has recently announced their ROADMAP TO A CURE!! Now scientist are closer than ever to reversing Rett Syndrome but they need our support. Please help JAYCEE and thousands of other little girls have a chance for a normal life.

We will move mountains to make sure that 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 Roses loving family and friends


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. Aaron's, Inc.  
    2 weeks ago
    $250
  2. Pig Roast  
    1 month ago
    $3,790
  3. Patricia Todriff 
    1 month ago
    $20
  4. Ann & Philip Tierney 
    1 month ago
    $20
  5. Paul Newman 
    1 month ago
    $25
  6. Doris & Michael Cowhey 
    1 month ago
    $25
  7. Michele & John Gottung 
    1 month ago
    $25
  8. Mari Casucci 
    1 month ago
    $40
  9. C.O.B.B. Society of Western Massachusetts 
    1 month ago
    $100
  10. Ethel Connors 
    1 month ago
    $100
  11. Berkshire County Deputy Sheriff's Association 
    1 month ago
    $100
  12. Rick Ruotolo 
    1 month ago
    $255
  13. Michael Stewart  
    2 months ago
    $100

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