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Explore conversations with researchers, medical experts, families, and advocates covering PDE research, care, advocacy, and the topics that matter most to our community.
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Cure PDE Webinars + Conversations
Bringing Experts + Families Together
Richard Novak, the CEO of Unravel, will present an overview of the Unravel Study — its goals, progress, and what this means for our shared mission to decode and cure PDE.
Drug Repurposing Study Results with Richard Novak
Dr. Curtis Coughlin shares recent research on Vitamin K’s role in PDE and updates on work supported by Cure PDE Foundation.
Vitamin K + PDE Research with Dr. Curtis Coughlin
A community update covering PDE research progress, newborn screening efforts, retreat plans, resources, fundraising, and family news.
CurePDE Community Update
Dr. Saadet Andrews explores how energy metabolism and metabolic disruptions may influence PDE progression and management.
Energy Metabolism in PDE with Dr. Saadet Andrews
Marjorie Dixon reviews updated dietary guidelines for PDE and what families should know about incorporating them into everyday care.
New Dietary Guidelines for PDE with Marjorie Dixon
Dr. Phillip Pearl shares lessons from gene therapy for AADC deficiency and how similar approaches could inform future PDE treatments.
Gene Therapy with Dr. Phillip Pearl
Julia Taravella shares how her children’s AGU diagnoses inspired her to create the Rare Trait Hope Fund and pursue a gene therapy cure.
A Mother’s Mission to Develop Rare Disease Therapeutics
Dr. Anna Sowa leads an approachable conversation on genetics, giving families a clear introduction or refresher on the basics.
Genetics with Dr. Anna Sowa
Richard Novak explains how Unravel identifies existing drugs that may be repurposed to address unmet needs in rare disease.
Repurposing Existing Drugs with Richard Novak
Longtime community member Alecia shares her experience growing up with PDE, living independently, raising a daughter, and finding connection within the community.
Living with PDE - Alecia’s Story
Libby Hopton shares practical strategies for managing PDE during illness, navigating ER visits, and advocating for your child’s care.
Managing PDE During Illness with Libby Hopton
Dr. Phillip Pearl reviews B6-responsive epilepsies, current approaches to diagnosis and treatment, and emerging targeted therapies for PDE.
Understanding PDE with Dr. Phillip Pearl
Dr. Curtis Coughlin introduces the IN-TIME grant and its focus on faster diagnosis and improved outcomes for treatable metabolic epilepsies.
The IN-TIME Grant with Dr. Curtis Coughlin
Dr. Connie Zong discusses health conditions that may occur alongside PDE, including torticollis, strabismus, ADHD, and other shared challenges.
Common Health Conditions with Dr. Connie Zong
Leah Trotter shares her son Jack’s PDE journey, from diagnosis and testing to advocacy, evolving emotions, and family resilience.
Leah + Jack’s PDE Journey
Dr. Sid Gospe explains the clinical phenotypes of the three forms of PDE, with a particular focus on PDE-ALDH7A1.
PDE Clinical Phenotypes with Dr. Sid Gospe
An introduction to CurePDE, our mission, and the ways families can connect, learn, and get involved.
Introduction to CurePDE
Jennifer Conrad shares how her family managed her daughter’s PDE diet over the years and what they learned along the way.
Managing Diet for PDE with Jennifer Conrad
Cure PDE Family Retreats
Our Family Retreats bring families from across the United States and Canada together for connection, education, research updates, and time with others who understand the PDE journey.
More Ways to Connect
Cure PDE brings families, researchers, clinicians, and advocates together throughout the year through in-person gatherings and educational conversations.
Upcoming Events
Stay connected to what’s coming next with Cure PDE, from family gatherings and conferences to community events and educational opportunities.
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