FOUNDATION TO FIGHT H-ABC

The Foundation to Fight H-ABC/TUBB4A is a U.S.-based nonprofit organization dedicated to improving the lives of individuals and families affected by H-ABC (Hypomyelination with Atrophy of the Basal Ganglia and Cerebellum), a rare and progressive neurological disorder or type of leukodystrophy, caused by mutations in the TUBB4A gene.

Founded in 2015 by families impacted by the disease, the Foundation works to accelerate research, raise awareness, educate healthcare professionals, and provide support and connection for patients and caregivers worldwide.

Because H-ABC is ultra-rare, families often face significant challenges in obtaining an accurate diagnosis, accessing knowledgeable care, finding support, and advancing research toward meaningful treatments. The Foundation serves as a catalyst for collaboration among families, researchers, clinicians, industry partners, and advocacy organizations.

Mission Statement

To improve the lives of individuals and families affected by H-ABC/TUBB4A-related leukodystrophy through research, awareness, education, advocacy, and support while advancing the search for meaningful treatments and ultimately a cure.

What We Do

• Fund and support research initiatives aimed at understanding H-ABC and advancing therapeutic development.
• Promote patient participation in natural history studies and research programs.
• Raise public and medical awareness of H-ABC/TUBB4A-related leukodystrophy.
• Develop educational resources for families, caregivers, healthcare professionals, and the broader community.
• Foster a supportive global community for individuals and families affected by H-ABC.
• Advocate for policies and programs that improve the lives of those living with rare neurological diseases.

Our Impact

The Foundation has played an active role in advancing H-ABC awareness and research through:

• Patient and caregiver education programs
• Collaboration with leading academic medical centers and researchers
• Support of natural history and translational research initiatives
• Organization of community awareness campaigns and educational events
• Facilitation of connections among affected families worldwide

Areas of Focus

• Rare Diseases
• Neurological Disorders
• Scientific Research
• Patient Advocacy
• Caregiver Support
• Disability Inclusion
• Health Equity
• Public Awareness and Education

Why Volunteer With Us?

Volunteers play a vital role in helping us expand our reach and impact. Opportunities may include:

• Event planning and community outreach
• Social media and digital communications
• Graphic design and content creation
• Fundraising and donor engagement
• Grant research and writing
• Healthcare and scientific advisory support
• Family and caregiver programs
• Administrative and organizational support

Whether you are a student, healthcare professional, scientist, communications specialist, advocate, or community volunteer, your skills can help accelerate progress for families living with a rare disease.