By Ian Joyce, Chief Operating Officer, Spina Bifida Association
When I joined the Spina Bifida Association five months ago — I was inspired by the resilience of the people we serve — and deeply moved by the challenges people with Spina Bifida face every day. I also came to understand something urgent: how vulnerable this mission is without your support.
Due to sudden and significant cuts in federal grant funding, SBA is facing a serious shortfall. Without immediate donor support, we are at risk of losing programs that thousands of individuals and families rely on every day.
This isn’t just a short-term challenge — it’s a turning point. And it’s why we need your help to build a stronger, more donor-powered Spina Bifida Association.
Why This Moment Matters
We’ve reduced expenses everywhere we can. But no amount of internal cost-cutting can close this funding gap alone.
The programs at risk aren’t optional extras. They’re vital to improving outcomes and providing trusted support, including:
- The Spina Bifida Patient Registry and Collaborative Care Networks
These raise the standard of care in clinics and hospitals across the country — helping ensure people with Spina Bifida receive consistent, informed, high-quality care. - Education and Resources
From childhood to adulthood, we equip families and individuals with information to make empowered decisions about their health, independence, and future. - National Advocacy
We work to ensure policies reflect the real needs of people with Spina Bifida — increasing access, improving care, and amplifying the voices of our community.
We also remain committed to reducing barriers — including bias and inequity in care — and we know none of this work is possible without the financial support of donors like you.
Building a Donor-Powered Future
For decades, the Spina Bifida Association has relied heavily on government grants to fund some of our work. That model is no longer sustainable.
Now, we must move forward with a new approach: one that is sustained by people who believe in our mission and want to ensure it continues — and grows stronger — for future generations.
Your donation today helps us:
- Bridge the immediate funding gap
- Maintain life-changing programs
- Reduce dependence on unpredictable government funding
- Build long-term sustainability through community investment
Why Your Gift Matters
When you give to SBA, you’re doing more than supporting a nonprofit — you’re ensuring that:
- Families facing a Spina Bifida diagnosis are met with clarity, not confusion
- Adults with Spina Bifida are empowered to live full, independent lives
- Policymakers and professionals understand and support our community
- Future generations grow up with better care and real opportunities
Make a Difference Today
We’ve taken every internal step we can. Now we’re turning to the people who care most.
Please make a gift today to help us sustain this vital work — and create a future that’s powered by our community, not dependent on federal grants.
Together, we can protect and grow the Spina Bifida Association — for this generation and the next.