To meet the growing needs of individuals and families impacted by Spina Bifida, SBANYS is requesting $250,000 in the 2026–27 New York State Budget. This investment will support the hiring of regional staff statewide, strengthening education, outreach, and partnerships with hospitals and providers. Encourage your representatives to help expand support for New Yorkers living with Spina Bifida by clicking the link below!
The Spina Bifida Association of New York State is committed to advancing equity, access, and inclusion for all people impacted by disabilities. We fundamentally believe that every person with Spina Bifida should have quality and knowledgeable care as well as equal opportunity to participate in society fully. We work with consumer advocates to illuminate the voices of the Spina Bifida community by engaging with local, state and federal representatives. Key priorities identified by our advocates are medical care, housing and home care. We are recruiting those impacted by Spina Bifida and individuals with advocacy experience interested in advocating on a local, state, and federal level: SIGN UP HERE
Each winter the Association meets with 20+ state Assembly members and Senators to provide information about Spina Bifida as a condition, programs and services of the Association, and steps New York State can take to improve outcomes for people impacted by Spina Bifida. A major focus of the Association is the annual request for state budget funding necessary to adequately serve all those impacted by Spina Bifida in the state. The Association also collaborates with advocacy agencies on disability issues related to insurance, employment, housing, education, and medical care.
The National Spina Bifida Association hosts an annual Advocacy Summit each year called Teal on the Hill. This event brings hundreds of members of the Spina Bifida community together from across the U.S. to advocate for continued funding for the National Spina Bifida Program at the Centers for Disease Control & Prevention (CDC) which addresses issues such as: disability rights, affordable and accessible health care, medical supplies, and technologies.
Our Advocacy Toolkit is designed to help advocates, families, and professionals in the Spina Bifida community engage effectively with policymakers, community partners, and the public.
Inside, you’ll find:
Advocacy 101: Learn how government works and how to make your voice heard.
Tips for Effective Advocacy: Build relationships, share your story, and track legislation.
How a Bill Becomes Law: Understand the process at both the state and federal levels.
Practical Tools: Guidance for contacting legislators, writing letters, attending meetings, and raising awareness.
Use this toolkit to build confidence, strengthen your advocacy skills, and create positive change for people with disabilities across New York State.