Needs From: MC Serves!

The Foundation to Fight H-ABC is seeking creative and compassionate volunteers to help support children and families affected by H-ABC/TUBB4A related leukodystrophy, an ultra-rare neurological disease.

We are looking for individuals, groups, students, hobbyists, artists, and community makers who would like to donate handmade or creative items that can be featured at community fairs, festivals, fundraising events, raffles, and awareness activities throughout Montgomery County and the surrounding area.

Not approved for MCPS SSL hours.

This opportunity is perfect for people who enjoy creating and want to use their talents to make a meaningful difference.

We welcome:

Quilters, knitters, and crocheters Artists and painters Jewelry and craft makers Woodworkers Bakers and treat creators Cricut and vinyl designers Seasonal and holiday crafters Scout troops, clubs, and church groups Students seeking service hours Anyone with creative ideas and a desire to help

Examples of possible donated creations include:

Quilts and blankets Handmade crafts and decorations Gift baskets Artwork and painted items Holiday items Car-themed creations for our “Rare Wheels for Rare Disease” events Sensory-friendly or children’s items

Volunteers can participate from home, contribute occasionally or ongoing, and may also choose to assist at local events and community booths.

Our goal is to create engaging, welcoming community displays that not only raise funds, but also increase awareness and bring hope to families navigating rare disease.

Every handmade item tells a story — and every act of creativity helps move awareness, support, and research forward.

Learn more about the Foundation to Fight H-ABC:  h-abc.org

Thank you!

Not approved for MCPS SSL hours.

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 leadershipHelp 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

Website:  h-abc.org

The Foundation to Fight H-ABC is seeking a passionate volunteer with strong community, business, philanthropic, or donor connections to help expand awareness and fundraising support for children living with H-ABC (TUBB4A-related leukodystrophy), an ultra-rare neurologic disease.

This volunteer role is ideal for someone who enjoys opening doors, making introductions, building relationships, and helping nonprofit missions grow.

Responsibilities may include:

Introducing the Foundation to potential donors, sponsors, businesses, or philanthropic contacts Helping identify corporate sponsorship or community partnership opportunities Supporting fundraising efforts tied to awareness campaigns and special events Sharing the Foundation’s mission within personal or professional networks Serving as a champion for children and families impacted by rare disease

Ideal candidates may have experience in:
Fundraising, sales, community leadership, nonprofit board service, philanthropy, corporate partnerships, business networking, or social media influence.

Time commitment: Flexible; approximately 2–5 hours per month or project-based.

Why it matters:
Your connections and advocacy can help accelerate awareness, family support, and research efforts for children living with a devastating ultra-rare disease that currently has no cure.

Location: Virtual, with optional support for community initiatives in Montgomery County, Maryland and beyond.

Website:  H-abc.org

Not approved for SSL