About Us
We support families affected by SCN8A by connecting families, researchers, clinicians, and partners to advance understanding and quality of life. Through DEE-P Connections and the Inchstone Project, we provide education, shared tools, and develop outcome measures that enable individuals with the most severe DEEs, including many with SCN8A, to participate in clinical research and trials.
Help shape the future of Decoding Developmental Epilepsies
Gabi Conecker, MPH
Gabi hold a Masters in Public Health (MPH) and is the mother of Elliott, who has SCN8A and severe epilepsy (DEE). Driven by a parent’s desire to fight for their child, Gabi has made a significant impact in the SCN8A and DEE communities.
Co-Founder & Executive Director-
Bio coming soon…
JayEtta Hecker
JayEtta is a national advocate for families affected by rare and catastrophic epilepsies, with a focus on SCN8A and DEEs. Her work centers on building collaboration across families, researchers, clinicians, and industry to advance inclusive research and meaningful progress.
Co-Founder & Board Chair-
Board Chair and Co-founder of the International SCN8A Alliance and Wishes for Elliott. JayEtta is an economist who specialized in independent public policy analyses and held several positions with the National Academy of Sciences.
JayEtta is a formidable advocate in the fight against SCN8A and developmental and epileptic encephalopathies. Her journey into SCN8A and DEE advocacy is deeply personal, driven by her connection to the cause as the mother of Gabi Conecker, the Executive Director, and grandmother to Elliott, who has SCN8A and Severe DEE.
JayEtta had an illustrious career as an economist and policy analyst. She held key positions with the National Academy of Sciences and contributed 25 years to the Government Accountability Office, the Congressional research arm. Her work in public policy analysis and her numerous testimonies before Congress have laid a solid foundation for her current advocacy, allowing her to navigate and influence the complex landscape of medical research and healthcare policy.
Leadership Team
Deputy Executive DirectorKelly Muzyczka, PhD
Kelly Muzyczka, PhD, is an applied social scientist with over ten years of experience leading collaborative research and program design efforts. Her work emphasizes equity, accessibility, and practical solutions that improve how systems work for families and communities.
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Bio coming soon…
Program DIrector & Lead ScientistGabby Sarlo, PhD
Gabby Sarlo is a clinical neuroscientist with seven years of experience in pediatric epilepsy, contributing through research, scientific program leadership, and science policy engagement. She is committed to translating complex science into clear, accessible information for researchers, clinicians, and families.
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Bio coming soon…
Brian Pfister
Brian is a pharmaceutical and biotechnology executive with nearly 30 years of experience in epilepsy and rare neurological disorders. His work is shaped by both industry leadership and his experience as a parent of a child with epilepsy.
Global Medical Affairs Expert-
Brian Pfister is a seasoned pharmaceutical and biotechnology executive with nearly 30 years of experience across drug development, medical affairs, and commercialization, with a strong focus on epilepsy and rare neurological disorders. He currently works on hereditary angioedema programs at Pharvaris Inc. and previously served as Vice President and Global Medical Head of the Epilepsy Franchise at Praxis Precision Medicines, where he led global medical strategy and clinical execution.
Brian has held senior leadership roles at Pear Therapeutics, PTC Therapeutics, SK Life Science, Ironwood, Lundbeck, and Novartis, contributing to the development and launch of therapies across neurology, psychiatry, rare disease, and gene therapy. He is widely recognized for building and scaling medical affairs organizations, advancing clinical programs, and fostering strong collaborations with investigators, healthcare providers, and patient advocacy communities.
He holds a PhD in Psychology, an MBA, and a BA in Psychology and German. Brian’s professional work is deeply informed by his personal experience as a parent of a child with epilepsy, strengthening his commitment to improving outcomes for individuals and families affected by rare neurological conditions.
Anne Thompson Heller, PhD, LMFT
Anne holds a PhD in human development and family sciences and has worked in research, clinical care, and policy focused on health and wellbeing. She is also the mother of a child with DEE, bringing lived experience to her commitment to supporting families.
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Anne is a respected professional in the field of human development and family sciences, with a Ph.D. from the University of Connecticut. Her academic work focuses on health and wellbeing, particularly in the context of collegiate recovery programs. She has applied her expertise as a Licensed Marriage and Family Therapist to provide supportive mental health services and contribute to policy development at the University of Connecticut.
In her personal life, Anne is a dedicated mother to daughter Jordan, who has DEE, giving her a deeply personal connection to the condition. Her professional pursuits are informed and enriched by her firsthand experiences, driving her commitment to support and advocate for families navigating similar challenges.
Board of Directors
Therapeutic Strategy, Rare DiseaseJuliane Mills, MS, MPH
Juliane Mills is a rare disease clinical and therapeutic strategy leader with more than 20 years of experience across research and global drug development. Her work focuses on building strong partnerships between patient advocacy groups and industry to advance patient-centered clinical research in complex and underserved conditions.
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Juliane Mills is a rare disease clinical and therapeutic strategy leader with more than two decades of experience spanning laboratory science, clinical research, and global drug development. She currently serves as Executive Director of Therapeutic Strategy for Rare Disease and Real-World Evidence at Worldwide Clinical Trials, where she partners with biopharma and advocacy stakeholders to advance development programs across complex and underserved conditions.
Throughout her career, Juliane has held senior roles in scientific affairs, clinical operations, and therapeutic strategy at organizations including ICON, PRA Health Sciences, United BioSource Corporation, Centocor, and DuPont Pharmaceuticals. Her work has supported programs from early development through late-stage clinical trials, with deep expertise in rare disease trial design, regulatory strategy, endpoint development, and Good Clinical Practice. She has also served as a science consultant to the Chan Zuckerberg Initiative, contributing to initiatives aimed at accelerating biomedical research and collaboration.
Juliane holds a Master of Science in Public Health and a Master of Science in Science Communication. She is deeply committed to strengthening collaboration between patient advocacy organizations, researchers, and industry, with a focus on elevating caregiver and patient priorities in drug development. As a member of the Board of Directors, she brings strategic insight, cross-sector perspective, and a strong commitment to advancing meaningful, patient-centered research for developmental and epileptic encephalopathies.
Educator and AdvocateAriel Gibbons
Ariel is an educator with a deeply personal connection to SCN8A and is dedicated to supporting families with SCN8A and DEEs. Her work focuses on strategic communications and board advocacy.
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Ariel Gibbons has over 15 years experience as an educator. Ariel’s expertise and dedication shine in her advocacy for inclusive education.
Her passion for education extends beyond the classroom, as she holds a master’s degree in ESL and Special Education and K-12 education.
Her commitment to the International SCN8A Alliance exemplifies her dedication to making a difference in the lives of those affected by SCN8A and DEEs.
Policy development & strategic comms Michael Halpern
Michael Halpern is a science and technology policy leader with more than 20 years of experience advancing mission-driven programs across healthcare, government, and advocacy organizations. His work focuses on strategic communications, movement building, and integrating scientific evidence into effective public policy.
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Michael is a dedicated Science & Technology Policy Program Director with a rich background spanning over two decades. Known for his strategic leadership and commitment to integrating science in policy-making, Michael has steered significant initiatives across healthcare, government, and various sectors. He is passionate about advancing scientific integrity and fostering collaborative solutions to complex challenges. With a knack for communication and innovation, Michael is a respected figure in science policy, continually working to ensure that scientific insights lead to positive societal impact.