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.

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!

🛝 Making Playtime Fun for Every ChildYou don’t need a perfect playground to make play meaningful. Even at home, in the y...
11/25/2025

🛝 Making Playtime Fun for Every Child

You don’t need a perfect playground to make play meaningful. Even at home, in the yard, or in community spaces:
• Use toys and games that work for all abilities
• Adapt activities so everyone can join in
• Make board games, card games, or arts and crafts reachable
• Adjust rules so all children can participate and feel successful

Let’s make playtime fun for everyone!

Living with Spina Bifida comes with unique challenges — but you don’t have to face them alone.Join our Adult Group tomor...
11/24/2025

Living with Spina Bifida comes with unique challenges — but you don’t have to face them alone.

Join our Adult Group tomorrow on Zoom for open conversations, shared experiences, and community connection. Together, we support one another through both the struggles and the wins.

🗓️ Tomorrow—November 25 | 6–7:30 PM
💻 Register Here: https://sbanys.org/event/adult-group/

Why Advocacy MattersAdvocacy is more than speaking up — it’s creating real change for yourself and the Spina Bifida comm...
11/22/2025

Why Advocacy Matters

Advocacy is more than speaking up — it’s creating real change for yourself and the Spina Bifida community. Here’s why it’s so important:
• Access to Services – Advocacy helps secure healthcare, education, and support programs that meet individual needs.
• Improved Accessibility – Speaking up can lead to more inclusive homes, schools, workplaces, and public spaces.
• Empowerment – Advocating builds confidence and independence for individuals and families.
• Awareness & Change – Sharing your story educates others and influences policies that impact lives.

Your voice matters. Every effort to advocate creates opportunities, removes barriers, and builds a stronger, more inclusive community.

💡 Learn more: https://sbanys.org/advocacy/

Your story has power.Contact your local and state representatives to share what inclusion and access mean for people wit...
11/21/2025

Your story has power.

Contact your local and state representatives to share what inclusion and access mean for people with Spina Bifida.

1. Find your state and local official here: https://elections.ny.gov/new-york-state-elected-officials
2. Call or email — explain barriers you face in healthcare, education, or mobility
3. Ask for their support in improving accessibility

Together, we can make New York more inclusive for everyone.

📣 Your Voice Matters: Advocacy Tools You Can UseAdvocating for yourself or others with Spina Bifida doesn’t have to be c...
11/21/2025

📣 Your Voice Matters: Advocacy Tools You Can Use

Advocating for yourself or others with Spina Bifida doesn’t have to be complicated. There are many ways to make an impact:
• Letters & Emails – Reach out to elected officials, school administrators, or service providers to share your needs and experiences.
• Phone Calls – A direct call can make your voice heard immediately.
• Petitions – Gather community support for changes in policy, accessibility, or programs.
• Social Media – Share your story, tag organizations or policymakers, and raise awareness.
• In-Person Meetings – Attend town halls, school meetings, or disability advocacy events to speak directly with decision-makers.

Using these tools effectively can help improve accessibility, services, and opportunities for people with Spina Bifida. Your advocacy matters — and it can spark real change!

Finding a home that meets your accessibility needs can be challenging, but advocacy can make a real difference. Here’s h...
11/20/2025

Finding a home that meets your accessibility needs can be challenging, but advocacy can make a real difference. Here’s how to take action:
• Know your rights under the Americans with Disabilities Act (ADA) and Fair Housing Act
• Document your accessibility needs clearly when communicating with landlords or housing authorities
• Request necessary modifications, such as ramps, widened doorways, or accessible bathrooms
• Connect with local disability organizations or Centers for Independent Living for support and guidance
• Share your experiences to raise awareness about the importance of accessible housing

Advocating for accessible housing helps ensure independence, safety, and dignity for people with Spina Bifida and other disabilities.

📞 📧 Call or contact our office to request assistance with referrals to housing: info@sbanys.org — (518) 399-9151

Now that you have had the opportunity to read Mary’s first two blogs about being born with Spina Bifida – Myelomeningoc...
11/19/2025

Now that you have had the opportunity to read Mary’s first two blogs about being born with Spina Bifida – Myelomeningocele and then diagnosed with Bladder Cancer, you can read her third installment live now:

The Day I Lost My Bladder—but Kept My Life

To read, click on our website link: https://sbanys.org/blog-post/from-birth-to-beyond-marys-story-the-day-i-lost-my-bladder/

Mary shares details from her life-altering surgery, where her bladder and surrounding organs were removed to give her a fighting chance against Bladder Cancer. She goes into detail about the ramifications of recovery, yet still reminds us that there can always be triumph over tragedy.

Mary has also almost made it into the Quarter Finals of the Fab Over 40 competition she is competing in to raise awareness about Spina Bifida + Bladder Cancer! So we hope you are placing your free vote for her every 24 hours - because together, we can help her win and spread the word about Spina Bifida!

Here is the link to vote - you can also find it in Mary’s social media bio: https://fabover40.org/2025/mary-67c6

After you vote, read Mary’s third blog, and let us know what you think!

, , ,

For individuals with Spina Bifida, safe transfers and fall prevention are essential for independence and confidence. Sma...
11/18/2025

For individuals with Spina Bifida, safe transfers and fall prevention are essential for independence and confidence. Small adjustments at home can make a big difference:

• Use grab bars and handrails in bathrooms, hallways, and near steps
• Keep walkways and pathways clear of clutter
• Ensure wheelchair or mobility device brakes are engaged before transferring
• Use transfer boards or assistive devices when moving from chair to bed or car
• Wear proper footwear and consider non-slip mats

Every step toward safety helps prevent injuries and supports independence at home.

The countdown is almost over — only 4 days left until the 2025 Dare to Dream Gala!Don’t miss your chance to be part of a...
11/18/2025

The countdown is almost over — only 4 days left until the 2025 Dare to Dream Gala!

Don’t miss your chance to be part of a night filled with celebration, inspiration, and impact. Join us November 22nd, 5–9 PM, at the Hilton Garden Inn, Troy, NY, for a three-course dinner, live music by Jeff Brisbin, auctions, and awards.

With Honorary Chair Reid Kisselback, WNYT Meteorologist, leading the evening, this is your final opportunity to secure a seat at a night that supports real change for people living with Spina Bifida.

Want to learn more about the gala and our mission? Check out this interview with our Executive Director Julia Duff on WNYT NewsChannel 13: https://www.newsbreak.com/share/4348919133645-spina-bifida-association-dare-to-dream-gala-next-saturday?_f=app_share&pd=0OJ5ilan&lang=en_US&send_time=1763306536&trans_data=%7B%22platform%22:0,%22cv%22:%2225.46.1.3%22,%22languages%22:%22en%22%7D&s=i16

Ticket Options:
• Individual: $95 | $85 if 32 & under | $75 for individuals living with Spina Bifida
• Table for 8: $720
• Honorary Committee & Sponsorships: Available

Reserve your spot before it’s too late: https://sbanys.org/event/daretodream/

Need financial assistance?
To help offset some costs, consumers traveling more than 60 miles away request that their hotel stay be covered. SBANYS is not responsible for any transportation expenses: https://docs.google.com/forms/d/e/1FAIpQLSez9WqzHi7js7iv97OhSrstEmvgrxCs50ufFutuf_YEMY5PGw/viewform

Save the Date: March 15th, 2026!SBANYS has been granted FIVE charity bibs for the 2026 United Airlines NYC Half Marathon...
11/17/2025

Save the Date: March 15th, 2026!

SBANYS has been granted FIVE charity bibs for the 2026 United Airlines NYC Half Marathon — and we’re thrilled to be back!

Are you interested in being a runner or signing up to be on the committee? If so, register today with us and be in the know: https://sbanys.org/event/nyc-half/

Make an Impact This Week!When you give to SBANYS, you’re helping kids and young adults reach their potential:• Financial...
11/17/2025

Make an Impact This Week!

When you give to SBANYS, you’re helping kids and young adults reach their potential:

• Financial scholarships that open doors for education and experiences
• Employment training programs that build confidence and independence
• Educational workshops and conferences that teach life-changing skills

Every donation gives someone the support they need to grow, learn, and thrive. Your gift can make a real difference in a family’s journey with Spina Bifida.

Donate Today!: http://www.spinabifidaassociation.org

Address

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

Telephone

+15183999151

Website

Alerts

Be the first to know and let us send you an email when Spina Bifida Association of New York State posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram

Category