Spina Bifida Association of New York State

05/03/2026

What is mental health?

Mental health is more than just emotions. It includes our emotional, psychological, and social well-being, and it shapes how we think, feel, and interact every day. It also influences how we handle stress, build relationships, and make decisions.

For individuals with Spina Bifida, mental health plays an important role in quality of life. Challenges such as anxiety, depression, and social difficulties can affect development, independence, and relationships. At the same time, strengths like resilience, coping skills, and family support can lead to better outcomes and a stronger sense of well-being.

Early identification and access to support can make a meaningful difference across the lifespan.

Learn more from the Spina Bifida Association’s Mental Health Guideline:
https://www.spinabifidaassociation.org/blog/mental-health/

Need mental health support? The New York State Office of Mental Health is here to help. Find a mental health program in your county: https://my.omh.ny.gov

05/02/2026

This is your sign to register.

Don’t miss out. Be there on May 17. Just 2 weeks away.

From 10am to 2pm, the Schenectady & Long Island Walk-N-Rolls bring people together for a day that’s bigger than any one of us. It’s a day filled with energy, connection, and community, all in support of the 4,000+ New Yorkers living with Spina Bifida.

This is where families, friends, and supporters come together to show up, show our Spina Bifida pride, and celebrate our community. You’ll feel the impact the moment you arrive.

It only takes a minute to sign up.

Two locations:
• Long Island: Eisenhower Park, East Meadow, NY
• Schenectady: Central Park, NY

Registration is required to attend
Sign up today!: https://charity.pledgeit.org/c/7xte3mdd97

Presented by Byram Healthcare

Thank you to our sponsors: National Grid, the Whelan Foundation, NYSID, Bussani Mobility, Advisors Insurance Brokers, Laurence Hoch Foundation, Capitaland Motors, Hollister, and Derrek's Bags

Having trouble registering? We’re here to help. Email us at info@sbanys.org

05/01/2026

May is Mental Health Awareness Month.

For individuals with Spina Bifida and those who love and care for them, mental health is part of everyday life.

From childhood through adulthood, experiences with social connection, independence, and life transitions can shape emotional well-being. Early support, strong family connections, and access to care can make all the difference.

This month, we’re reminding our community: your mental health is just as important as your physical health.

Need someone to talk to? The National Maternal Mental Health 24/7 Hotline is available:
https://mchb.hrsa.gov/programs-impact/national-maternal-mental-health-hotline

Want to learn more? Read the Mental Health Guideline from the Spina Bifida Association: https://www.spinabifidaassociation.org/blog/mental-health/

Adults living with Spina Bifida, join our next Adult Group on May 26th via Zoom from 6 to 7:30 PM. Connect with others who understand, share your experiences, and support one another through life’s challenges and successes.
Register and learn more: https://sbanys.org/event/adult-group/

04/30/2026

SBANYS is so grateful for the support from our Social Work interns each year. This is our 7th cohort of interns and it never gets easier!

Congratulations to these amazing women. From left to right:

Natalie Rosado: graduating with her MSW from SUNY Albany and pursuing a career in government

Jayden Hillage-Scribner: graduating with her BSW from Siena

Mary Beth Cotrupi: completing the first year of her MSW from SUNY Albany and moving on to her second year placement at Northern Rivers.

Kylie Largeteau: graduating from Marist with her MSW and continuing to serve as SBANYS full-time Program and Clinical Manager.

Please wish them well on their journeys ahead!

04/30/2026

The NYS Assembly hosted the 46th Annual Legislative Disability Awareness Day (LDAD) yesterday at the Capitol Building.

SBANYS attended to raise awareness about Spina Bifida as a developmental disability and push for legislation to have the NYS definition of developmental disability modified to include Spina Bifida.

Check out Julia Duff and Paul Lukasiewicz on WNYT Channel 13 discussing the issue: https://wnyt.com/capital-region-news/spina-bifida-advocates-push-for-disability-recognition-at-ny-capitol/ .

YOUR VOICE MATTERS: You can learn more and take action on this issue here: https://campaigns.civiclick.com/1273e3cd-db52-4cf1-abc4-837354126928

We also partnered with the League of Women Voters and Living Resources to promote voter access and participation amongst the disability community. Stay tuned for future events as we continue to support and promote the disability voice at the polls.

To get involved in SBANYS Advocacy Committee, please contact: julia.duff@sbanys.org.

04/29/2026

Mark your calendars for May 29th to May 30th, 2026
Spina Bifida Clinical Care Meeting
Scottish Rite for Children, Dallas, Texas

Individuals living with Spina Bifida are encouraged to attend. You can apply for the Frank Bucino Scholarship by emailing info@sbanys.org

More details here: https://sbanys.org/event/spina-bifida-clinical-care-meeting/

04/29/2026

🎁 Turn your fundraising into something real.

Exclusive Walk-N-Roll incentives are waiting.

We’ve raised $30,000 of our $55,000 goal, and with both Walk-N-Rolls in Schenectady and Long Island just 2 weeks away, now is the time to push your fundraising further.

Every dollar you raise brings you closer to exclusive rewards:

🎯 $100 Tier
• F***y Pack
• Short Sleeve Walk-N-Roll Shirt
• Walk-N-Roll Cap

🎯 $500 Tier
• Backpack
• Long Sleeve Walk-N-Roll Shirt
• Tote Bag

🎯 $1,000 Tier
• Polar Camel 20 oz Handle Mug
• 60" x 85" Plush Blanket

And for those who go even further, individuals or teams who raise $1,000+ will unlock location-exclusive rewards:
📍 Long Island: 2 Mets Tickets for May 31, 2026
📍 Schenectady: 2 Tickets to the Dare to the Dream Gala in Troy, NY

Incentive items will not be available in person at either Walk-N-Roll. After the event, anyone who reaches or passes the $100 fundraising tier will receive an email with a special code and link to claim their items, which will be shipped within 2 weeks.

In addition to incentives, we’ll also be recognizing top fundraisers at both Walk-N-Rolls:
🏆👩 Top 3 Individuals Who Raise the Most Money
🏆👫 Top 3 Teams Who Raise the Most Money
🏆👫Team Spirit

The Schenectady and Long Island Walk-N-Rolls are almost here:
🗓 Sunday, May 17th
⏰ 10AM to 2PM

📍 Long Island Walk-N-Roll
Eisenhower Park in East Meadow, NY
Enter via Merrick Road: 200 Merrick Avenue, East Meadow, NY
Parking Lot 1, Sycamore Pavilion, to the right of the ice rink

📍 Schenectady Walk-N-Roll
Central Park in Schenectady, NY
Thomas E. Isabella Picnic Pavilion
Enter via Union Street or GPS Monument Hill Road & Iroquois Way

Now is the time to register, donate, or create and join a fundraising team: https://charity.pledgeit.org/SBANYSWalkNRoll

Registration is required to attend.

If you need help with registration, creating a team, joining a team, or have any questions, please email our office at info@sbanys.org.

Presented by Byram Healthcare

Thank you to our Sponsors: National Grid, The Whelan Foundation, NYSID, Purchasing That Powers Employment, The Bussani Mobility Team, Advisors Insurance Brokers, Laurence Hoch Foundation, Capitaland GMC Subaru , Hollister Incorporated, and Derrek's Bags

04/28/2026

We were honored to be introduced on the New York State Assembly floor by Assemblymember John McDonald . He represents New York’s 108th District, which includes all of Cohoes and Rensselaer and parts of Albany and Troy. The Spina Bifida Association of New York State was presented with a proclamation recognizing October 2026 as Spina Bifida Awareness Month in New York State. SBANYS Executive Director Julia Duff and Program and Clinical Manager Kylie Largeteau were proud to represent our community alongside Shameka and Elizabeth.

04/28/2026

What does it really mean to pay it forward? 💚💙

It means showing up for families, for the community, and for the future.

This Global Pay It Forward Day, you can make a difference by supporting our Walk-N-Roll for Spina Bifida in Schenectady and Long Island. It’s a celebration of strength, resilience, and the 4,000+ New Yorkers living with Spina Bifida.

Every step we take, and every dollar raised, helps provide critical support, education, and opportunities for independence.

✨ $25 supports a new family
✨ $150 helps fund employment training programs

Be part of something bigger. Help us move forward together.
Donate today: https://charity.pledgeit.org/SBANYSWalkNRoll

04/27/2026

Still smiling after an unforgettable weekend at Frost Valley YMCA. This slideshow captures just a glimpse of the laughter, connection, and joy our families shared together in the Catskills. Moments like these remind us what community is all about.

Thank you again to everyone who joined us. We already miss it.

04/27/2026

04/27/2026

What an incredible weekend at Frost Valley YMCA! Families came together for a few days of outdoor fun, connection, and community in the Catskill Mountains.

From getting creative with arts and crafts, to relaxing by the water while fishing, to singing our hearts out at karaoke. The young family retreat was filled with shared experiences to new friendships. Meaningful moments like these remind us how strong and supportive our community is!

Thank you to all the families who joined us and made this weekend so special. We can’t wait to see you again next time!