Greetings friends, family and wonderful supporters of “a cur” for Zoey.
Zoey, now 10 years old, has had a challenging 2024. She had surgery at the beginning of 2024 to remove the hardware from her 2023 hip surgery which went well. Unfortunately, her scoliosis became severe and required total spinal fusion surgery in August. She did very well with the 9 ½ hour surgery, and is recovering well. Prior to the surgery, she was able to enjoy her summer at several special needs camps, one of which had a wheel chair zip line and rope swing that she really enjoyed. She continues to progress well in school and participate in Girl Scouts, but due to the spinal fusion, is no longer allowed to do her therapeutic horseback riding. She takes her challenges in stride and brightens our day with her smile.
Please help us achieve “a cur” for Rett syndrome with a generous donation to our 2024 campaign. Rett Syndrome Research Trust (RSRT) has recently launched a $40 million Roadmap to Cures initiative with a goal to have next generation gene editing and RNA-editing therapies in clinical trial by 2028, which will require increased fund raising. While RSRT has successfully motivated companies to start gene replacement clinical trials, science has progressed. The gene replacement therapy is exciting and potentially life changing, but it requires just the right dosage as too little won’t work and too much creates problems. The gene and RNA-editing therapies offer a potentially complete and more effective cure, which is why RSRT started this campaign.
To support RSRT’s Roadmap to Cures, Bonnie and I have increased our annual donation to $15,000. We value the wonderful support you have provided, and hope you can continue. If you can and are willing to increase your support that would be terrific. Either way we greatly appreciate all you have done to help our Zoey! 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. YOU ARE MAKING A DIFFERENCE!! We expect to have published results from the two gene replacement clinical trials by early 2025. As noted last year, RSRT continues to promote multiple strategies as no one knows which will succeed or be the best, including MECP2 Reactivation, RNA and gene editing. 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 |
|---|---|---|
| Jeff & Sue Kemmerer | $200 | October 15, 2024 |
| Patricia Peffley | $200 | October 15, 2024 |