Rare Disease Fundraising Ambassador

The Foundation to Fight H-ABC is seeking passionate volunteers to help raise awareness and support for individuals and families affected by H-ABC/TUBB4A-related leukodystrophy, an ultra-rare neurological disorder.

Fundraising Ambassadors serve as champions for our mission by helping connect the Foundation with community organizations, businesses, civic groups, faith communities, and potential donors. Ambassadors help expand awareness, strengthen community engagement, and support efforts that accelerate research and patient support programs.

Responsibilities

• Introduce the Foundation to community organizations and local businesses
• Help identify sponsorship and fundraising opportunities
• Assist with community awareness events
• Support peer-to-peer fundraising campaigns
• Share Foundation news and educational resources through personal and professional networks
• Help recruit volunteers and supporters
• Represent the Foundation at community events when appropriate

Ideal Candidates:

• Strong communication skills
• Comfortable building relationships
• Passion for healthcare, disability advocacy, rare diseases, or community service
• Experience in fundraising, sales, business development, nonprofit work, or community engagement is helpful but not required

Time Commitment:

Flexible, approximately 2–10 hours per month.

Location:

Remote (United States)

Your efforts will help advance research, awareness, education, and support for families affected by a devastating rare neurological disease.