Spina Bifida Association of New York State

Spina Bifida Association of New York State Our mission is to build a better and brighter future for all those impacted by Spina Bifida.

💙 Bittersweet Update 💙We’re sharing a heartfelt farewell as Kathleen Watt has decided to move on from her role as Operat...
12/03/2025

💙 Bittersweet Update 💙

We’re sharing a heartfelt farewell as Kathleen Watt has decided to move on from her role as Operations and Clinical Manager at SBANYS to continue her social work journey as a hospital social worker at St. Peter’s! We are so grateful for her dedication, compassion, and the lasting impact she has made on our organization and the Spina Bifida community. We wish her all the best in her next chapter! 🌟

At the same time, we’re thrilled to welcome Kylie Largeteau as our new Program and Clinical Manager! Many of you already know Kylie from her time as an MSW intern with us, and we’re confident she’ll continue to be a trusted and caring presence in our community. 🎉

Please feel free to wish Kylie a warm welcome and introduce yourself by emailing her here: kylie.largeteau@sbanys.org

Thank you for being part of our community and for your continued support! 💙

Today, on International Day of Persons with Disabilities, we celebrate the achievements, resilience, and contributions o...
12/03/2025

Today, on International Day of Persons with Disabilities, we celebrate the achievements, resilience, and contributions of individuals with disabilities across New York State and the world.

At the Spina Bifida Association of New York State, we’re committed to advocacy, accessibility, and inclusion for people with Spina Bifida—because everyone deserves equal opportunity to learn, work, and thrive.

Let’s continue to break down barriers, raise awareness, and build communities where everyone belongs.

Learn more about our programs and advocacy efforts: https://sbanys.org

Students with Spina Bifida often need both physical and learning accommodations to thrive in school — from accessible cl...
12/02/2025

Students with Spina Bifida often need both physical and learning accommodations to thrive in school — from accessible classrooms to extra time and assistive technology.

From IEPs to 504 Plans, special education services help provide mobility support, learning accommodations, and individualized instruction that empower students to succeed. They turn challenges into opportunities for growth, confidence, and inclusion.

Today, on National Special Education Day, we celebrate the educators, families, and advocates making inclusive education possible. In addition, we recognize the power of IEPs and 504 Plans in ensuring every student can learn, grow, and succeed.

Explore SBANYS’s Toolkit for Educators and Parent Supplement for more school-based Spina Bifida resources: https://sbanys.org/education/

12/02/2025

We are grateful to be a recipient of the Numotion Foundation's generosity in 2025! Without their partnership programs like our statewide conference and adaptive basketball clinic would not have been possible 💙

This Giving Tuesday, help us empower individuals and families living with Spina Bifida across New York State.Your gift —...
12/02/2025

This Giving Tuesday, help us empower individuals and families living with Spina Bifida across New York State.

Your gift — no matter the size — creates real change.

Every dollar you give supports care packages for new parents, education and advocacy programs, and job training that creates real opportunities.
• $25 supports a family just beginning their journey
• $150 funds a week of job training for independence

Make a difference today: https://www.paypal.com/paypalme/SBANENY

📣 Open Enrollment is Here!Enroll in a Qualified Health Plan through the New York State of Health Marketplace by Dec 15 f...
12/01/2025

📣 Open Enrollment is Here!

Enroll in a Qualified Health Plan through the New York State of Health Marketplace by Dec 15 for coverage starting Jan 1, 2026.

Open Enrollment: Nov 1, 2025 – Jan 31, 2026
Deadline for Jan 1 coverage: Dec 15, 2025

Enroll Today!: https://nystateofhealth.ny.gov/?utm_source=socialmedia&utm_campaign=open+enrollment+13&utm_medium=organic

Need help? Healthy Capital District offers FREE, in-person guidance from Certified Navigators—incluyendo asistencia en español —serving Albany, Schenectady, and Rensselaer Counties.

Call (518) 462-7040 or email hcdi@hcdiny.org to get started.

Don’t wait—get your coverage sorted for 2026!

It's Marathon Monday! 🏃‍♀️Interested in running the 2026 United Airlines NYC Half Marathon for SBANYS? Applications are ...
12/01/2025

It's Marathon Monday! 🏃‍♀️

Interested in running the 2026 United Airlines NYC Half Marathon for SBANYS? Applications are now open!

To be considered for one of our five charity bibs, every interested runner — even those already qualified or officially entered — must submit a completed application and sign a waiver. All applications are reviewed individually, with priority given to:
• Your personal fundraising goals
• Your reason for wanting to run for SBANYS
• How early you submit your completed application

Important Dates:
• Applications accepted now through Jan 15, 2026
• Bib notifications go out Jan 15, 2026
• Bib acceptance due Feb 1, 2026

Minimum Fundraising Commitment: $2,000

Running with SBANYS means supporting our mission to uplift, empower, and connect the Spina Bifida community across New York State. We want to know what running for SBANYS means to you — your story matters, and it strengthens your application.

Your packet includes our Guidelines, Liability Waiver, and Application. Please fill out every section.

If you have questions, reach out to Julia at Julia.Duff@sbanys.org or 518-399-9151. Our team will support you with fundraising tools, tips, and guidance so you can have a fun and meaningful race experience.

Apply today and run with purpose.
https://sbanys.org/event/nyc-half/

Advocating for accessible medical imaging and exam tablesHealthcare should work for everyone—but for people with Spina B...
11/30/2025

Advocating for accessible medical imaging and exam tables

Healthcare should work for everyone—but for people with Spina Bifida, barriers still exist:
• Medical imaging machines and exam tables that aren’t adjustable
• Rooms and equipment that don’t accommodate mobility needs
• Appointments that can become unsafe, uncomfortable, or impossible

Here’s how you can help:
• Advocate for accessible medical equipment in your local clinics and hospitals
• Speak up to healthcare providers about the barriers you or your loved ones face
• Support policies that ensure all patients can receive care safely and with dignity

Inclusive healthcare isn’t a luxury—it’s a right. Every voice matters in creating a system that works for everyone.

💻 Advocating for Yourself in Telehealth AppointmentsTelehealth can make healthcare more accessible — but it also means s...
11/29/2025

💻 Advocating for Yourself in Telehealth Appointments

Telehealth can make healthcare more accessible — but it also means speaking up for your needs.

Here are a few tips:
• Prepare questions, concerns and goals in advance and write them down
• Ask for clear explanations — it’s okay to say, “Can you explain that another way?”
• Request follow-up notes or summaries
• Make sure your provider understands your Spina Bifida care needs
• Bring a family member, friend, or support person if you want extra help

Advocacy starts with your voice — even through a screen. 📱

Mary’s fourth blog about living with Spina Bifida – Myelomeningocele + Bladder Cancer is available now:Scarred but Stron...
11/28/2025

Mary’s fourth blog about living with Spina Bifida – Myelomeningocele + Bladder Cancer is available now:

Scarred but Stronger: Surviving the Side Effects of Cancer Treatment

To read, click on this link: https://sbanys.org/blog-post/https-sbanys-org-blog-post-from-birth-to-beyond-marys-story-scarred-but-stronger/

In this blog, Mary takes us from start to finish and describes her harrowing tale through cancer treatment: from intense side effects, to dark humor, to ultimately hope.

Mary has endured so much through her cancer journey and is on a mission to raise awareness about Spina Bifida + Bladder Cancer. Thanks to all of you - she is in the Quarter Finals of the Fab Over 40 competition to do just that!
Votes or donations from previous rounds, or the following individual rounds, do NOT carry over. EACH TIME, votes are reset, and all contestants begin with 0 votes! There are only 3 rounds left.
SO -
• Vote every 24 hours.
• Double your impact on 2 for 1 days.
• Buy votes - every $1 counts as 1 vote and is a deductible donation which goes directly to the National Breast Cancer Foundation!
• And when you buy votes, you still receive a daily free vote - so keep voting!
Here is the link to vote: https://fabover40.org/2025/mary-67c6

Your kindness has transformed her life and can now reach so many others. Your continued generosity brings hope to my life and so many others with Breast Cancer, Bladder Cancer, and Spina Bifida.

, ,

Partnership makes progress possible.Event sponsorship with SBANYS isn’t just a contribution — it’s a commitment to celeb...
11/28/2025

Partnership makes progress possible.

Event sponsorship with SBANYS isn’t just a contribution — it’s a commitment to celebrating, advocating for, and empowering people with Spina Bifida in New York State.

From events like the Dare to Dream Gala to the Walk-N-Rolls, your partnership ensures every program leaves a lasting impact.

Join us in 2026 to help grow inclusion and opportunity statewide!

Learn more:https://sbanys.org/wp-content/uploads/2025/10/2026-SBANYS-Sponsor-Guide.pdf

This Thanksgiving, we’re grateful for our incredible Spina Bifida community — the families, advocates, volunteers, and s...
11/27/2025

This Thanksgiving, we’re grateful for our incredible Spina Bifida community — the families, advocates, volunteers, and supporters who make our work possible all year long.

Thank you for helping us build a stronger, more connected future for people living with Spina Bifida across New York State.

From all of us at the Spina Bifida Association of New York State, we wish you a happy and safe Thanksgiving!

Address

133 Saratoga Road , Professional Bldg. , Office 4
Scotia, NY
12302

Telephone

+15183999151

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