Patient Webinars
Join us for an insightful webinar featuring Dr. Rene Pierpont, Pediatric Neuropsychologist and Assistant Professor of Pediatrics at the University of Minnesota, as she presents the findings from her recent study on behavioral patterns in individuals with CFC syndrome.
This session will offer an overview of the research, key takeaways for families and caregivers, and what these findings may mean for care and support strategies moving forward.
Dr. Pierpont brings a wealth of clinical and research experience in working with children with complex medical and neurodevelopmental needs. She is deeply committed to partnering with patient communities to improve outcomes and access to meaningful resources.
Following the presentation, there will be time for Q&A, so attendees can ask questions and engage directly with Dr. Pierpont.
This is a valuable opportunity for caregivers, educators, and professionals to gain a deeper understanding of behavior in CFC syndrome and how we can better support those affected.
Behavior in CFC Syndrome
Overview of seizures in cfc syndrome
Tuesday, November 18, 2025
8:00 p.m. EST
Join us for an informative webinar with Dr. Daniel Kenney-Jung, focusing on seizures in children with CFC syndrome. While some seizures are easy to spot, others can be complex or subtle—especially in children with CFC. This session will explain what seizures are, how they affect the brain, and how to recognize less obvious seizure activity in this population.
Dr. Daniel Kenney-Jung received his MD from Tufts University School of Medicine in 2009. He completed a residency in pediatric neurology at the Mayo Clinic, followed by fellowships in clinical neurophysiology, pediatric epilepsy, and epilepsy research, also at Mayo. He is currently an assistant professor of neurology at Duke University in North Carolina, where he primarily sees patients with epilepsy, neurogenetic, and neurodegenerative disorders.
This webinar is designed for parents and caregivers seeking to better understand and identify seizures in children with CFC syndrome.
New Parent Orientation
Saturday, December 6, 2025
10:00 a.m. EST
Join Tuesdi Dyer, CFRE, Executive Director at CFC International,
Pilar Magoulas, MS, CGC – Chief of Genetic Counseling, Associate Professor at Baylor College of Medicine, Vice President of the CFC Board & Vice Chair of Research, and Ashley Genelin, Ed.S., Program Manager at CFC International for an informative and welcoming session about CFC syndrome, the mission of CFC International, our Family Support Network, and more.
We’ll also leave plenty of time for your questions—because we know that stepping into this community often comes with both uncertainty and hope.
Open Office Hour with Tuesdi, Executive Director
Time & Date TBD
Webinar description and speaker biography coming soon!
Thursday, October 9, 2025
8:00 p.m. EST
REGISTER TO ATTEND
All webinars are virtual and are free for CFC families to attend. After CFC International receives your registration, they will send the Zoom link for the webinar. For questions contact info@cfcsyndrome.org. See you there!