IRSF Parent Panel: My Trofinetide Clinical Trial Experience

In March our community celebrated a first for Rett: trofinetide, now known commercially in the US as DAYBUE™, became the first-ever FDA-approved treatment for Rett syndrome. This approval was the culmination of a journey that began more than a decade ago and succeeded only thanks to the perseverance and commitment of the researchers and families who participated in every stage of the clinical trials. During the trials, these families gained insight into the side effects of this treatment and saw first-hand the potential benefits for their loved ones with Rett.
Join IRSF for a candid Q&A with parents whose daughters participated in different stages of the trofinetide clinical trials. During this 1-hour webcast, they share their experience with the treatment, covering topics including how they managed side effects, what changes they saw in their daughters, and what they would share with any parent considering DAYBUE for their child.
Our Parent Panelists:
- Silvia Baker, parent to Olivia, age 17
- Patty Mevis, parent to Kira, age 16
- Erica Waggenspack, parent to Kerrigan, age 5
The panel is moderated by Paige Nues, IRSF Family Empowerment Director, and Dr. Amitha Ananth, Co-Director of the UAB/Children's of Alabama Rett Syndrome Clinic and a principal investigator for the trial, and includes questions submitted by our community.
To learn more about the International Rett Syndrome Foundation and our mission to accelerate research and empower families, visit rettsyndrome.org. To learn more about DAYBUE (trofinetide) for the treatment of Rett syndrome, visit daybue.com.
Medical Disclaimer: All information presented during this webcast is intended for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your specific medical condition.