What you Need to Know About DAYBUE (trofinetide)
Video Series
You can also learn more about DAYBUE at daybue.com and find links to all the resources you need on our blog post.
IRSF Parent Panel:
My Trofinetide Clinical Trial Experience
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 Panelists:
Silvia Baker, parent to Olivia, age 17 | Patty Mevis, parent to Kira, age 16 | Erica Waggenspack, parent to Kerrigan, age 5 | Paige Nues, IRSF Family Empowerment Director | Dr. Amitha Ananth, Co-Director of the UAB/Children’s of Alabama Rett Syndrome Clinic and a principal investigator for the trial.
Audio Only:
Download the transcript: English | Español
IRSF Physician Panel:
Answering Your Questions About Trofinetide
During this 1-hour webcast, join IRSF and a panel of physicians who treat individuals with Rett syndrome. As principal investigators for the trials, our panel has firsthand knowledge of the potential benefits and side effects of trofinetide. They answer your pre-submitted questions, share their anecdotal learnings, and provide information important for any parent considering DAYBUE for their child.
Our Panelists:
Dr. Tim Benke – Professor of Pediatrics, Pharmacology & Neurology at the University of Colorado and director of the Rett Clinic at Children’s Hospital Colorado.
Dr. Robin Ryther – Director of the Rett Spectrum Clinic at Washington University School of Medicine and St. Louis Children’s Hospital in Missouri.
Moderated by Carmen Luna, IRSF Clinican Network Manager
Audio Only:
Download the transcript: English | Español
Part 1 – What is DAYBUE (trofinetide)?
A Q&A with IRSF Chief Science Officer, Dr. Dominique Pichard
In this first in our 3-part Q&A series, Dr. Dominique Pichard, IRSF Chief Science Officer, answers some of your most frequently asked questions about DAYBUE (trofinetide) in a discussion with IRSF’s Tim Frank, including:
– What is trofinetide and how does it work?
– What were the results and side effects from the clinical trials?
– What do we know now about DAYBUE, including who it’s approved for, how it’s administered, and how families can access it?
Audio Only:
Download the transcript: English | Español
Part 2 – Advocacy & Accessibility
A Q&A with IRSF Chief Executive Officer, Melissa Kennedy
In the second video in the series, IRSF’s CEO Melissa Kennedy shares important information about the accessibility and affordability of DAYBUE and future treatments, and what you can do NOW to advocate. Some of the questions covered include:
– What happens after FDA approval?
– What will DAYBUE cost?
– What do we know now about trofinetide’s availability outside the United States?
Audio Only:
Download the transcript: English | Español
Part 3 – Parent-to-Parent
A Q&A with IRSF’s Family Empowerment Team,
Paige Nues & Samantha Brant
In the final video in our Q&A series, IRSF’s Family Empowerment Team, Paige Nues and Samantha Brant, have a frank and emotional conversation about what the FDA approval means to the families they speak with every day and to themselves personally as parents of children with Rett syndrome. With IRSF’s Tim Frank, himself a Rett dad, they share stories from the Rett community, celebrate this historic milestone for the Rett community, and highlight the heroes who have given of themselves on the path to FDA approval.
Audio Only:
Download the transcript: English | Español
Acadia Webinar for Caregivers
On March 28th, Acadia hosted a webinar for caregivers to introduce the community to DAYBUE.
All information 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.