What can families do to move the needle on research for their child’s condition — and how much does it actually matter? Pangkong Fox, PhD, knows this question from both sides: as a cell and molecular biologist, and as mom to Alex, diagnosed with a CACNA1A-related disorder in 2021. Now the Science Engagement Director for the CACNA1A Foundation, she uses “conversational science” to help parents become powerful advocates and active partners in the search for treatments. In this opening keynote, she explores what rare disease communities — including ours — are uniquely positioned to accomplish together.
This recording is from the 2026 ASXL Family Conference, June 26-28, Ann Arbor, Michigan, U.S.A.
Published: JUNE 2026
The information presented here is for educational purposes only. This information is not medical advice and should not be treated as such. You should always talk to your or your family member’s health care professionals for diagnosis and treatment, including information regarding which drugs or treatment may be appropriate for you or your family member. We do not represent or warrant that any particular treatment is safe, appropriate or effective for you or your family member. In the event of a medical emergency, you should contact your doctor immediately or call your local emergency service.
