Thankfully, life seems to be resembling some form of “normalcy” again as we try to recover post pandemic. We sure are glad those times are behind us and hope that you all are doing well. With the start of a new school year for Alice this past week and the exciting advancements in gene therapy for Rett this year, we wanted to reach out and share.
Alice started 2nd grade last week and she is ecstatic to be back in her general education classroom with her friends! She was able to attend a summer school program this year so she was able to spend more time in a place she loves.
Alice’s therapies are all back in person thankfully and she is working hard every week in speech, occupational therapy, and physical therapy. She is trying a new form of robot-assisted PT, which is incredible. We are very excited to see the gains she continues to make in her walking and hopefully will see more in communication this upcoming year as well.
There were three incredibly exciting advancements in Rett research this past year:
- The first ever gene therapy trial for Rett started in Canada by Taysha. They successfully dosed their first patient with the gene therapy and reported impressive improvement post therapy. They are now in the process of dosing their second patient.
- A second gene therapy trial, by Neurogene, also started recruiting for their Phase 1/2 study in the US.
- Lastly, the first treatment (Daybue) for select Rett syndrome symptoms was fully FDA approved.
We are incredibly hopeful for the improvements these drugs could make for Alice and her future!!! The outlook has never looked so promising and in large part due to your past contributions to Alice’s campaign in support of RSRT. We are overwhelmingly appreciative of the support that we have and continue to receive from each of you. As we are kicking off a new campaign, we want to emphasize that every little bit has enabled the Rett Syndrome Research Trust (RSRT) to deliver on their mission of finding a cure. Through their pipeline of ground-breaking therapeutic approaches, we are hopeful that Alice will be able to have life-changing treatment within a few years. This wouldn’t be possible without you all and we are grateful for the daily support you give Alice.
Allen & Kelsey Chu
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