The CACNA1A Foundation’s Creating Connections Conference brings together patients and families, scientists and physicians, care providers, therapists, and teachers to learn, connect, and share their knowledge, experiences, and strategies for enhancing the lives of those affected by CACNA1A-related diseases. Over 50 families joined us in 2024 for an incredible experience. We thank everyone who played a role in making it possible.
Our next Conference will be in the summer of 2026. We hope you will join us.
Welcome to Day 1
Lisa Manaster, President and CoFounder, CACNA1A Foundation
CACNA1A 101: The Genetics of CACNA1A
Laina Lusk, MMSc, CGC, Children’s Hospital of Philadelphia and Jen Pan, PhD, Broad Institute of MIT and Harvard
Clinical Trial Readiness Initiative: Natural History Studies, Biomarker Project, CACNA1A Rare-X Data
Terry Jo Bichell, PhD, CombinedBRAIN; Wendy Chung, MD, PhD, Boston Children’s Hospital; Pangkong Fox, PhD, CACNA1A Foundation Science Engagement Director
Epilepsy and Hemiplegic Migraines: Ask the Experts Anything Panel
Irene de Boer, MD, PhD, Leiden University Medical Center Alexis Karlin, MD, Schneider Children’s Medical Center of Israel Elsa Rossignol, MD, MSc, FRCP, University of Montreal
Movement Disorders (ataxia, dystonia, eye movements): Ask the Experts Anything Panel
Kristin Baranano, MD, PhD, Johns Hopkins Scott Grossman, MD, NYU Langone Joanna Jen, MD, PhD, Mount Sinai Camilla Kilbane, MD, Case Western
Science is Better Together: Insights from the Research Roundtable
Pangkong Fox, PhD, CACNA1A Foundation; Marina Hommersom, PhD, Radboud Univ. Medical Center; Dennis Lal, PhD, UTHealth Houston
Welcome to Day 2
Sunitha Malepati, Vice President CACNA1A Foundation
Let’s Talk About Cerebral/Cortical Visual Impairment (CVI)
Rachel Bennett, Director of CVI Now and parent advocacy and support at the Perkins School for the Blind
Mastering the Art of Advocacy in a Healthcare Setting
Allison Buchner, CACNA1A Foundation Board Amy Junge, CACNA1A Foundation Board
Empowering Change: The Impact of Community Engagement
Effective Speech and Language Therapy Strategies for Children with CACNA1A-related Disorders
Lynnley Moore, MA, CCC-SLP, CBIS; Rachel Anderson, MS, CCC-SLP; Hayeon Kang, MS, CCC-SLP - All from the Kennedy Krieger Institute
Understanding Your Child’s Neurodevelopmental or Neuropsychological Evaluation
Mary Wojnaroksi, PhD, Nationwide Children’s Hospital
Closing
Amy Junge, CACNA1A Foundation Board
Breakout Session - Special Education Survival Guide
Mary Wojnaroksi, PhD, Nationwide Children’s Hospital
Breakout Session - Vocational Rehabilitation: Assisting People with Disabilities Toward Gainful Employment
Tandra Hunter-Payne, Division of Rehabilitation Services
