Jaycee is a 7 year old girl who 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 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.
Unfortunately, due to the situation with Covid-19, we have been forced to cancel this year’s in person Jammin’ for Jaycee’s Fight for a Cure fundraiser. We know that many of our family members and friends may not be in a position this year to donate but we still wanted to set up the online campaign for those of you who would like to and we look forward to hopefully seeing everyone at an in person event next year.
AveXis/Novartis has recently released a statement regarding their AVXS-201 gene therapy program for Rett Syndrome. The statement assures the Rett community that they are fully committed to this program, that preclinical studies are mostly complete, and that they will be working with the FDA in the coming months to progress towards an Investigational New Drug submission and a clinical trial. This is very promising news.
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.
Sincerely,
Jaycee Rose’s loving family and friends
| Name | Donation Amount | Date |
|---|---|---|
| Silviya Peevska | $300 | November 06, 2021 |
| Louis Eisenman | $500 | October 23, 2021 |
| Larry and Mary Stewart | $500 | October 22, 2021 |
| Gary Allard | $25 | October 18, 2021 |
| Pamela Mason | $20 | October 13, 2021 |
| Christine Spiess | $25 | October 13, 2021 |
| Amy Johnson | $20 | October 12, 2021 |
| Terry Morin | $50 | October 11, 2021 |
| Mike & Tina Stewart | $500 | October 11, 2021 |