Make a Difference

Get Involved

Whether you're a family member, researcher, healthcare professional, or someone who cares about rare diseases, there are many ways to support our mission and make a meaningful impact.

Donate Now Volunteer

Make a Donation

Your generosity directly supports families navigating rare disease diagnoses and funds critical research to better understand HNRNP-related neurodevelopmental disorders.

One-Time Gift

Make an immediate impact with a one-time donation of any amount. Every dollar helps.

Donate Now

Monthly Giving

Become a sustaining supporter with a recurring monthly gift that provides reliable funding.

Start Monthly Gift

Fundraise

Create your own fundraising campaign in honor of someone you love or for a special occasion.

Start a Campaign

Become a Volunteer

Our volunteers are the heart of our organization. From welcoming new families to organizing events, there are many ways to contribute your time and talents.

Family Support Ambassador

Welcome newly diagnosed families, answer questions, and provide emotional support through our community network.

2-4 hours/month

Social Media Champion

Help spread awareness by sharing stories, engaging with our community, and amplifying our mission online.

Flexible

Event Coordinator

Assist with planning and executing virtual and in-person events, including our annual family conference.

Varies by event

Content Creator

Write blog posts, create educational content, or help document family stories for our community.

Project-based

Interested in volunteering? We'd love to hear from you!

Join Our Board

We are always looking for passionate individuals to help guide our organization's strategic direction and governance.

Board Member Responsibilities

Provide strategic guidance and oversight
Attend quarterly board meetings (virtual)
Participate in committee work based on expertise
Advocate for the foundation and its mission
Support fundraising and community outreach efforts

We're Looking For

Parents and caregivers with lived experience
Healthcare professionals (geneticists, neurologists, therapists)
Nonprofit management and governance expertise
Legal, financial, or marketing professionals
Researchers in genetics or rare diseases

Interested in serving on our board? Apply to join our team.

Apply to Join Board

For Scientists & Researchers

We actively collaborate with researchers worldwide to advance understanding of HNRNP-related disorders. Whether you're seeking patient cohorts, funding opportunities, or partnership, we want to hear from you.

Research Collaboration

Join our community of clinicians and researchers! Opportunities may include:

Patient registry access
Family surveys and data collection
Biospecimen coordination
Use of biospecimens
Natural history study participation

Grants & Funding

We offer research grants to support studies focused on HNRNP-related disorders. If you are interested in applying for a grant, please contact us.

Pilot research grants
Conference travel support
Collaborative funding opportunities
Letters of support for grant applications

Ready to Collaborate?

We're eager to support research that advances our understanding of HNRNP-related disorders and brings us closer to treatments.

Contact Our Research Team Learn About Our Registry

Join Our Natural History Study

Help us better understand HNRNP-related disorders by participating in our Natural History Study. Your data contributes to groundbreaking research and helps pave the way for future treatments.

Learn More & Enroll