Like all children with Rett syndrome, Josephine is perfectly imperfect. She is unable to perform the daily tasks most people take for granted, but still finds ways to live her life to its fullest—thanks in great part to recent scientific advancements. This year she continued to benefit from a newly-approved medication that allows her to do things that bring her happiness and improve her quality of life. In 2024 she used her eye-gaze device to write a poem that was published in a poetry anthology. (It was about purple aliens!). She began learning German. She made a group of friends who dance with her at recess. She dressed as a sparkle rainbow unicorn for Halloween.
Because Rett is relentless and progressive, the clock is ticking for everyone with Josephine’s disease. When she enters adolescence in a few years she will face increased risk of dystonia, an uptick in seizures, and scoliosis. We need help to quickly develop more ways to help the Josephines of the world. Two companies have begun clinical trials for gene replacement therapies, and the initial data is promising. A four-year-old with Rett Syndrome who had no hand use now holds her own juice box and taps a tablet to watch videos. A seven-year-old who drank thickened liquid and was spoon fed pureed food now feeds herself apple slices and drinks regular water. Please help us continue to make miracles like this possible by contributing to ongoing research through the Rett Syndrome Research Trust—an organization whose sole focus is to find cures for Rett syndrome. Our greatest wish for 2025 is for the good news to keep on coming!
Josephine's Hero
2 Donors
Josephine's Star
2 Donors
Josephine's Champion
1 Donor
Josephine's Supporter
7 Donors
Josephine's Advocate
4 Donors
| Name | Donation Amount | Date |
|---|---|---|
| Nancy Parrish | $50 | December 21, 2024 |
| Brooke Grant | $50 | December 20, 2024 |
| Patricia Abts | $25 | December 15, 2024 |
| Judith Meier | $500 | December 14, 2024 |
| Debbie and Neil Bass | $25 | December 13, 2024 |
| Claire Cheng | $1,000 | December 12, 2024 |
| Anonymous | $250 | December 12, 2024 |
| Frances Weidinger | $100 | December 11, 2024 |
| Caroline Proctor | $100 | December 10, 2024 |
| Diane Rogers | $100 | December 06, 2024 |
| Donna Warshaw | $50 | December 06, 2024 |
| Jane Kim | $100 | December 06, 2024 |
| Kathy Martin | $200 | December 05, 2024 |
| Michele Grabber | $1,000 | December 04, 2024 |
| Leonard Meier | $100 | December 03, 2024 |
| Ashley Gearhardt | $50 | December 03, 2024 |
| Laura Shoop | $500 | December 03, 2024 |
| Lori Hilt | $20 | December 03, 2024 |
| Claire McMurray | $100 | December 03, 2024 |