Patient Advisory Council

Stephen Henderson is a rare disease parent advocate and leader focused on developing digital tools that both support families in managing daily life with AHC and facilitate clinical trial readiness through improved data collection and symptom tracking. Since his daughter Estella’s diagnosis with Alternating Hemiplegia of Childhood (AHC) at nine months old, Stephen worked to advance research, data collection, and caregiver resources. He brings strategic insight and a parent-centered perspective to the global effort to improve outcomes for those with rare neurological conditions.  Stephen has served on the Board of the Alternating Hemiplegia of Childhood Foundation (AHCF) and currently serves on the Board of CureAHC.

Professionally, Stephen is the Director of Learning and Development at OpenLoop Health. His career in education spans elementary to graduate-level teaching and leadership. He holds a BA in Secondary Education, MAs in History and School Administration, and a doctorate in Educational Leadership.

Stephen developed the E app, a digital tool designed to help families track AHC episodes. Currently in use in two research studies, the app has the potential to play a valuable role in future clinical trials—reflecting Stephen’s commitment to bringing practical innovation to rare disease advocacy.

He lives in rural Iowa with his wife, Lacey, and their five children.

Joshua Marszalek is a longtime advocate at the international level for families affected by rare diseases, especially Alternating Hemiplegia of Childhood (AHC). As the father of Kathryn, who has lived with AHC for 14 years, Joshua has dedicated himself to advancing research, awareness, and support for the AHC community. He served on the Board of Directors for the AHC Foundation for nearly 13 years, including three years as President and several more as Vice President. His leadership helped steer international efforts in research, awareness, and community support.

Outside his advocacy work, Joshua is a registered architect and founder of Rural Valley Architecture, a Midwest-based practice focused on sustainable, creative, and service-oriented design. With degrees in Architecture and Environmental Design from Ball State University and over two decades of experience across residential, commercial, and institutional projects, he brings a practical, problem-solving mindset to his work.  His professional background in problem-solving and creative thinking informs his leadership in the rare disease space, where collaboration, persistence, and compassion are key.

Joshua is a devoted husband to Laura and father to two children—Levi, a 16-year-old son, and Kathryn. His work, both professionally and personally, is grounded in values of integrity, stewardship, and thoughtful collaboration.

Mila’s Mom, Founder & Chief Executive Officer, Mila’s Miracle Foundation

Julia founded Mila's Miracle Foundation in 2016 upon learning that her 6-yr-old daughter, Mila had Batten disease, a fatal genetic condition with no cure. In a race to save Mila, Julia’s collaboration with Dr. Tim Yu from Boston Children’s Hospital led to the first-ever medicine designed for one person, named milasen. After initially halting Mila's symptoms, her disease slowly progressed, and in 2021, Mila died at just ten years old. Driven by a sense of hope and responsibility, Julia’s on a mission to turn the groundbreaking work for Mila into an entirely new field of individualized medicines to help solve the global health crisis of genetic disease in children.

Julia has been leading the global movement, “Mila to Millions”, focused on convening the right people around the right ideas in the right places to pilot system-wide change. She initiated the Rare Therapies Launch Pad, a UK pilot focused on modeling regulatory and reimbursement change, and is working on a documentary film as part of an impact campaign highlighting the moral imperative. She co-founded EveryONE Medicines, the first biotech focused on individualized medicines, and the N=1 Collaborative, the international hub for this new paradigm. Julia speaks regularly around the world, engaging academics, biotechs, governments and families.