Jaycee is a 6 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
Donation Amount
Minimum amount is $
Maximum amount is $100000
| Name | Donate Amount | Date |
|---|---|---|
| Kelsey Walden | $40.00 | October 22, 2020 |
| Silviya Peevska | $300.00 | October 17, 2020 |
| Tanya Kennedy | $15.00 | October 16, 2020 |
| Tanya Kennedy | $0.00 | October 16, 2020 |
| Rialene Hughes | $20.00 | October 16, 2020 |
| Melanie Ferrin | $10.00 | October 13, 2020 |
| Mike & Sharron Ciaburri | $100.00 | October 13, 2020 |
| Marty Kelly | $80.00 | October 13, 2020 |
| Scott Chappell | $50.00 | October 13, 2020 |
| Edward Keith | $50.00 | October 13, 2020 |
| Uncle Jeffy Goodell | $50.00 | October 13, 2020 |
| Terry and Jenn Bishop | $100.00 | October 13, 2020 |
| Josh Ragoza | $100.00 | October 13, 2020 |
| CHERYL ALBANO | $20.00 | October 10, 2020 |
| Larry and Mary Stewart | $500.00 | October 04, 2020 |
| Lisa Donovan | $25.00 | October 03, 2020 |
| Judith Condron | $25.00 | October 03, 2020 |
| Cara Carnevale | $50.00 | October 03, 2020 |
| Christian Scherr | $25.00 | October 03, 2020 |
| William Bonn | $50.00 | October 02, 2020 |
| Suzette Naylor | $20.00 | September 29, 2020 |
| Alisa Gubelman | $100.00 | September 26, 2020 |
| Cheryl Hart | $100.00 | September 24, 2020 |
| Elmar Uy | $25.00 | September 24, 2020 |
| Tracy Potter | $10.00 | September 23, 2020 |
| Fabrizio Perotti | $20.00 | September 23, 2020 |
| Tanya Haas | $50.00 | September 23, 2020 |
| Rick Petricca | $100.00 | September 22, 2020 |
| Dick Taylor | $200.00 | September 20, 2020 |
| Erica Murphy | $50.00 | September 19, 2020 |
| John Liang | $25.00 | September 19, 2020 |
| Dave Bassett | $25.00 | September 19, 2020 |
| cathy baldasaro | $25.00 | September 14, 2020 |
| Louis Eisenman | $1,000.00 | September 14, 2020 |
| Sandra Totter | $25.00 | September 14, 2020 |
| Mike & Tina Stewart | $500.00 | September 13, 2020 |
| Tim Freeman | $50.00 | September 13, 2020 |
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