Our Advisors 

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The Foundation to Fight H-ABC/TUBB4A is guided by world-class scientific experts and a committed board of parents and professionals who are united by one purpose: to bring hope, support, and solutions to families facing H-ABC/TUBB4A-related leukodystrophy.

    Key Scientific Advisors       

Our Scientific Advisory Board includes leading researchers and clinicians in neurology, genetics, and rare diseases. They provide critical insight and ensure that our research funding is guided by rigorous science and focused on the most promising therapeutic pathways.

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Josh Bonkowsky, MD, PhD

Dr. Josh Bonkowsky is a Professor of Pediatric Neurology at the University of Utah, with joint appointments in Pediatrics and Neurology. His clinical and research work focuses on leukodystrophies, language impairments, and the genetics of complex neurobehavioral traits. His team uses both the Utah Population Database and national datasets to investigate the genetic and medical impacts of these disorders.

As a scientific advisor to the Foundation to Fight H-ABC, Dr. Bonkowsky contributes his expertise in clinical and genetic research, supporting efforts to better understand and treat leukodystrophies, including H-ABC.

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 Marc P. DiFazio, MD          

Dr. Marc P. DiFazio is President of the Medical Staff and Medical Director of Ambulatory Neurology at Children’s National Hospital. He leads clinical and operational care for outpatient neurological services, with extensive expertise in pediatric neurology.

As a medical advisor to the Foundation to Fight H-ABC, Dr. DiFazio provides guidance on clinical care and patient outcomes, supporting the Foundation’s mission to improve the lives of children affected by rare neurological disorders.

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      Eric Mallack, MD   

Dr. Eric Mallack is an Assistant Professor of Neurology at the Johns Hopkins School of Medicine and Director of Clinical Research at the Moser Center for Leukodystrophies. He oversees neuroimaging, clinical, and trial research programs, and provides care in the Newborn Screening Follow-up, Multidisciplinary Leukodystrophy, and Neurogenetics Clinics.

As a scientific advisor to the Foundation to Fight H-ABC, Dr. Mallack brings expertise in brain development, clinical care, and neuroimaging, helping to guide strategies that improve diagnosis and advance research for leukodystrophies such as H-ABC.

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Steven J. Gray, PhD           

Dr. Steven J. Gray is an Associate Professor at UT Southwestern Medical Center, where he directs the Viral Vector Facility with appointments in the Departments of Pediatrics and Molecular Biology. He is an expert in gene therapy and viral vector development, focusing on innovative treatments for neurological disorders of the nervous system.

As a scientific advisor to the Foundation to Fight H-ABC, Dr. Gray provides expertise in gene therapy and translational research, helping to advance strategies aimed at developing effective treatments for H-ABC.

      Board Members    

Our Board of Directors brings real experience, compassion, and strategic leadership to the mission—driving awareness, advocacy, and action every day. Together, this team leads with heart, expertise, and an unshakable commitment to the children and families affected by H-ABC/TUBB4A-related leukodystrophy.

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Britt co-founded the Foundation to Fight H-ABC/TUBB4A in 2015 alongside his wife, Michele, after their daughter Elouise was diagnosed. He brings over 40 years of experience in sales and marketing, including owning and operating his own business.
Britt’s leadership guides the Foundation’s mission to support families and accelerate research.

Oscar “Britt” Sloan
President
Co-Founder    

Michele and Elouise outdoors on a sunny day. Michele has red hair and glasses, smiling, the Elouise (who has H-ABC) has brown hair, sunglasses, and an open-mouthed expression, with green trees and a blue sky with clouds in the background.

Michele Sloan co-founded the Foundation to Fight H-ABC/TUBB4A in 2015 with her husband, Britt, following their daughter’s diagnosis with H-ABC. As Chief Operating Officer, she brings a strong background in finance, with expertise in valuation and feasibility analysis, to lead the Foundation’s operations. Michele combines her professional skills with a deep commitment to advancing research and supporting families.

Michele Sloan
 Treasurer/Chief Operating Officer      

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        William Miller      
            Secretary             

William Miller serves as Secretary and is a corporate attorney specializing in life sciences. His expertise in strategic transactions and corporate governance strengthens the Foundation’s leadership and helps ensure effective growth and compliance.

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Diane Gooley
        Board Member       

Diane Gooley provides strategic guidance in program development with a focus on digital technology. As a Board Member and finance advisor, her expertise helps expand the Foundation’s impact through innovative solutions.

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Christopher Drescher
          Board Member         

Christopher Drescher is a Board Member with over 30 years of experience in corporate strategy and scientific business development. He advises on scientific advancements, grant management, and negotiation, guiding the Foundation’s funding efforts.

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Robert Ziarko
     Fundraising Chair      

Robert Ziarko, former Logistics Manager at General Motors, leads fundraising efforts. With extensive experience at St. Jude’s Hospital, he is dedicated to raising critical support for research and families affected by H-ABC.

Dedicated to Accountability, Advocacy, and Action.

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VIEW THE THE FOUNDATION’S 501(c3) STATUS & FINANCIALS
TAX ID 81-0950905