Scientific Advisory Board Member (Volunteer)
The Foundation to Fight H-ABC is seeking a volunteer Scientific Advisory Board Member to provide scientific and strategic guidance to our Board of Directors as we advance research for H-ABC (TUBB4A-related leukodystrophy), an ultra-rare neurologic disease affecting children.
This role is ideal for an experienced scientist, clinician, or translational research professional who can help our patient-led nonprofit evaluate scientific opportunities, interpret research discussions, and strengthen strategic decision-making related to therapeutic development.
Responsibilities may include:
- Advising board leadership on scientific and research strategy
- Reviewing research proposals, scientific materials, and partnership opportunities
- Helping interpret discussions with researchers, clinicians, biotech companies, and scientific collaborators
- Providing perspective on translational research, biomarkers, endpoints, and study design
- Advising on therapeutic pathways including drug repurposing, ASO, gene therapy, and related scientific approaches
- Helping identify scientific priorities and opportunities for limited research funding
- Participating in periodic virtual advisory discussions with board leadership
- Help identify funding opportunities through your network
Ideal candidates may have experience in:
Neurology, genetics, rare disease research, translational medicine, biomarkers, clinical trial design, biotechnology, drug development, regulatory science, or related scientific leadership.
Time commitment: Flexible; approximately 2–4 hours per month.
Why it matters:
Your expertise can help guide strategic scientific decisions that may accelerate research and treatment opportunities for children living with a devastating ultra-rare neurologic disease.
Qualifications:
Advanced scientific, medical, biotech, or translational research experience preferred (MD, PhD, PharmD, or equivalent experience helpful). Candidates should be comfortable reviewing scientific materials, interpreting research discussions, and communicating complex scientific concepts in practical terms to nonprofit leadership. Experience in neurology, genetics, biomarkers, drug development, clinical research, rare disease, or scientific advisory roles is highly valued. Prior board, advisory, or strategic consulting experience is a plus.
Location: Virtual
