Jammin’ for Jaycee 2019

  • Description
  • FAQ
  • Comments
  • Supporters

Jaycee is a 5 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 must 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.

We will be holding another event on October 20, 2019 in Pittsfield Mass at Tavern at the A in the form of a band concert called the 4th Annual Jammin' for Jaycee's Fight for a Cure. All proceeds will be 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 October 20, 2019 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 Rose's 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 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 (12)

  1. Silviya Peevska  
    6 hours ago
    $300
  2. Tanya Haas  
    14 hours ago
    $50
  3. Benjamin Popplewell 
    2 days ago
    $25
  4. Ashley Bove 
    2 days ago
    $50
  5. Diana Belair 
    2 days ago
    $50
  6. Tracy Potter 
    2 days ago
    $20
  7. Christine Thomson  
    2 days ago
    $100
  8. Bob & Cindy Basdekis 
    5 days ago
    $30
  9. Richard Petricca  
    2 months ago
    $100
  10. David & Terrie Comalli 
    2 months ago
    $200
  11. Lou Eisenman 
    2 months ago
    $300
  12.  
    3 months ago
    $100

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

Please upgrade today!