Live Parent Panel: My Trofinetide Clinical Trial Experience

Live Parent Panel: My Trofinetide Clinical Trial Experience

May 11, 2023 @ 7:00 pm – 8:00 pm America/New York Timezone

Date: May 11, 2023
Time: 7-8 p.m. ET


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 live webinar, they’ll 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 will be moderated by Paige Nues, IRSF Family Empowerment Director, and include questions submitted by our community.

Medical Disclaimer: All information, content, and material presented in this webinar is 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 healthcare provider with any questions you may have regarding your specific medical condition.