Patient Webinars

Occupational Therapy in CFC syndrome

Terapia Ocupacional en el Síndrome CFC

Martes, 26 de agosto de 2025, 8:00 p.m. (hora del Este)
Tuesday, August 26, 2025
8:00 p.m. EST

Únase a nosotros para una sesión informativa en español sobre el importante papel que desempeña la terapia ocupacional en el apoyo a las personas con síndrome CFC. Hablaremos sobre cómo la terapia ocupacional puede fomentar el desarrollo, la independencia y la calidad de vida en diferentes etapas. Al final de la presentación, habrá una oportunidad para que las familias hagan preguntas y reciban respuestas directamente de la Dra. Glenda Hux.

Este seminario web se presentará en español, pero habrá subtítulos disponibles en Zoom para quienes deseen seguir la conversación en otro idioma. Las preguntas se pueden hacer tanto en inglés como en español. ¡Esperamos contar con su participación!

Sobre la Dra. Glenda Hux:
La Dra. Hux es profesora asistente e investigadora en el Departamento de Trastornos de la Comunicación y Terapia Ocupacional en la Universidad de Arkansas y UAMS. Es una graduada con honores de primera generación de Boston University. Su interés en la neurocognición y la integración sensorial es muy personal, pues es madre de Lillian Gracie Hux, nacida con síndrome CFC. En memoria de su hija, la Dra. Hux fundó Lillian’s Legacy, que ha financiado investigaciones importantes sobre las convulsiones en el síndrome CFC. Recibió el premio Giovanni Neri de CFC International por sus avances en investigación y ha sido presidenta de la Junta Ejecutiva de esta organización.

Join us for an informative session in Spanish about the important role occupational therapy plays in supporting individuals with CFC syndrome. We’ll discuss how occupational therapy can promote development, independence, and quality of life at different stages. At the end of the presentation, there will be an opportunity for families to ask questions and receive answers directly from Dr. Glenda Hux.

This webinar will be presented in Spanish, but closed captions will be available on Zoom for those who would like to follow along in another language. Questions can be asked in both English and Spanish. We look forward to having you join us!

About Dr. Glenda Hux:
Dr. Hux is an Assistant Professor and Researcher in the Department of Communication Disorders and Occupational Therapy at the University of Arkansas and UAMS. A first-generation honors graduate of Boston University, her interest in neurocognition and sensory integration is deeply personal as a parent to Lillian Gracie Hux, born with CFC Syndrome. In memory of her daughter, Dr. Hux founded Lillian’s Legacy, which has funded important seizure research in CFC Syndrome. She received CFC International’s Giovanni Neri award for research advancement and served as president of its Executive Board.

Join us for an informative and empowering webinar with Morgan Jones, IEP trainer for the Mississippi Department of Education and a fellow CFC mom. Whether you’re just starting out on your special education journey or looking to better understand your child’s current services, this session is for you.

Morgan will walk us through the essentials of special education, including:
What services and supports may be available for your child
Your rights as a parent in the IEP process
How to prepare for and participate in IEP meetings
Common do’s and don’ts when navigating special education
What to expect in various school-based scenarios

Come ready to learn, ask questions, and gain confidence as you advocate for your child’s needs. You are not alone—and you don’t have to figure it all out on your own.

This webinar is free and open to all caregivers looking for clarity, support, and practical guidance on all things IEP-related.

Tuesday, September 16, 2025
7:00 p.m. EST

SPECIAL EDUCATION TELL ALL!

Are you new to the CFC community or recently received a diagnosis? You're not alone, and we're here to help.

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.

Saturday, September 27, 2025
10:00 a.m. EST

New Parent & Caregiver Orientation

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.

Thursday, October 9, 2025
8:00 p.m. EST

Behavior in CFC Syndrome

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!