We hope all of you have survived the past year in good health and spirits. Zoey had an excellent year in kindergarten with the help of her aide, eye gaze device and yes/no card. She continues to be a very happy girl most of the time. With the help of her aide and classmates’ understanding, she enjoys participating in their recess activities, and continues to enjoy crafts with Grandma, pool time, and her therapeutic horseback riding. She is outgrowing her wheelchair and she selected bright red for her new one, and wanted nothing to do with the other colors when her Mom asked her.
With your generosity, we achieved our $7500 goal last year, and we hope you will help us achieve $8000 this year. We will continue to match your donations up to $10,000. I continue to be very impressed by Rett Syndrome Research Trust (RSRT) and what they accomplish with limited resources. It is critical that we continue to support their efforts for Zoey and the others with Rett Syndrome.
RSRT continues to support 6 different strategies to potential cures as it is not possible to predict which will ultimately be successful. Two years ago, Novartis (AveXis) gene replacement seemed to be significantly ahead, but now a MECP2 Reactivation therapy is about on the same timeline for clinical trials and potential general use hopefully by 2025. Another biotech company, Taysha, is planning to launch a gene replacement clinical trial before the end of this year, which is possible because of data generated by RSRT-funded researchers. Plus there is good news from other genetic disorder clinical trials that give hope that when a cure is available, Zoey will be able to recover many of the development milestones that she has missed.
Dennis & Bonnie
|Patricia Peffley||$150.00||October 21, 2021|
|Matthew Freidly||$100.00||October 18, 2021|
|Suzanne Miller||$50.00||October 18, 2021|
|Jeffrey Doane||$500.00||October 18, 2021|
|Martha Petery||$100.00||October 17, 2021|
|Charles Mackey||$50.00||October 15, 2021|
|Marcia Perrotti||$50.00||October 14, 2021|