You may recall that in 2022, when Zoey was asked what her dream was, she spelled out “a cur” using her eye gaze device to select each letter. Zoey had a rough start to 2023 due to having to go through bilateral hip surgery in January. Ever the trooper, she rebounded more quickly than expected and despite additional therapy, found energy to join a Girl Scouts Brownie Troop, and recently has participated in Challenger Cheering. She continues with therapeutic horseback riding, and won the “Guts and Grit” award for her determination to get back to riding after surgery. She is doing great in school, now spelling more difficult words using eye gaze, such as the word “chocolate” when asked what she would want on a donut.
Please help us achieve “a cur” for Rett syndrome with a generous donation to our 2023 campaign. We exceeded our $8,000 goal last year. This year, I am asking you to collectively match our $10,000 donation. If you haven’t donated before, or for some time, please donate this year. The attached word document has a link to the crowdfunding website as well as other information if you prefer to call or send a check. If you have any issues or need help donating, please contact us and we will help.
Rett Syndrome Research Trust (RSRT) accomplishes a lot with limited resources and achieving a cure is their only mission. They hope to eliminate the need for RSRT to exist. Taysha, a biotech company, started their gene replacement clinical trial in 2023 in Canada on two adults so far, assisted by RSRT-supported research. Thus far the first patient is showing improvement and the clinical trial is being expanded to more participants. Another company, Neurogene, has achieved FDA approval to begin a pediatric gene replacement trial in the U.S. in the near future. RSRT continues to promote multiple strategies, including MECP2 Reactivation, RNA and gene editing, and several of these strategies are on track for becoming clinical trials and ultimately treatments or a cure. Because of RSRT strategies, there are eight biopharmaceutical companies with genetic based treatments for Rett Syndrome in their drug development pipelines.
There is hope but we need your help to achieve “a cur”.
Dennis and Bonnie
| Name | Donation Amount | Date |
|---|---|---|
| John Stachowiak | $250 | February 26, 2024 |
| Bayer matching gift | $750 | February 15, 2024 |
| Thomas Fowlston | $100 | February 05, 2024 |
| Hershey's match M Adair | $200 | January 22, 2024 |
| Hershey's match Primost | $100 | January 22, 2024 |
| Sergio Flores | $100 | January 02, 2024 |
| Michael Adair | $200 | January 01, 2024 |
| Patsy Primost | $100 | December 29, 2023 |
| Hershey's match Hnatishion | $50 | December 21, 2023 |
| Hershey's match Fisher | $100 | December 05, 2023 |
| Pamela & Mel Kerns | $75 | December 04, 2023 |
| John Hnatishion | $50 | November 28, 2023 |
| Jeff Kemmerer | $250 | November 19, 2023 |
| Gretchen Fisher | $100 | November 17, 2023 |
| David Tacka | $1,500 | November 14, 2023 |
| Deborah & Bill Buckfelder | $250 | November 06, 2023 |
| Matthew Freidly | $100 | November 06, 2023 |
| Matthew & Aubrey Lebo | $500 | November 04, 2023 |
| James Steeley | $250 | November 04, 2023 |
| Scott Buesking | $100 | November 01, 2023 |
| Wesley Petery | $750 | October 24, 2023 |
| Nancy & Richard Gates | $1,000 | October 23, 2023 |
| Jane Deck | $100 | October 21, 2023 |
| Jeffrey Doane | $500 | October 20, 2023 |
| Patricia Peffley | $200 | October 16, 2023 |
| Bethany & Mark Novis | $400 | October 16, 2023 |
| Pamela Bucher | $75 | October 14, 2023 |
| Gerald Urich | $150 | October 12, 2023 |
| Martha Petery | $100 | October 11, 2023 |
| Charles Mackey | $75 | October 10, 2023 |
| Virginia Edleman | $250 | October 10, 2023 |
| Bonnie & Dennis Adair | $10,000 | October 10, 2023 |