Spina Bifida Association of New York State

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Spina Bifida Association of New York State

Our mission is to build a better and brighter future for all those impacted by Spina Bifida.

06/18/2026

🧺 International Picnic Day has us looking forward to On the Trails!

On Sunday, July 26, 2026, join the Spina Bifida Association of New York State at the Syracuse Inner Harbor for a free community event celebrating the ADA’s 36th Anniversary.

Guests are invited to walk, roll, or bike along the Erie Canal, enjoy a breakfast picnic, connect with local vendors, and spend the day celebrating accessibility, inclusion, and community.

This event brings together On the Trails, Walk-N-Roll for Spina Bifida, and the Erie Canal First Mile Challenge.

📍 Syracuse Inner Harbor
360 W. Kirkpatrick St.
Syracuse, NY 13204

Free to attend.

Hosted by the Spina Bifida Association of New York State, Golisano Children’s Hospital, Syracuse Parks and Recreation, The Erie Canalway, Central New York Adaptive Sports, EFR/ARISE Adaptive Design, Rochester Accessible Adventures, and The Joe Family Foundation for Disability Advocacy Inc.

Registration is required to attend

Register Today: https://sbanys.org/event/sbanys-conference/

06/18/2026

A day created for the Spina Bifida community is coming to Syracuse!

Join SBANYS for our third annual conference, Empowering Minds and Enriching Futures: Innovations in Care, Technology, and Daily Living, on Saturday, July 25 at the DoubleTree by Hilton Hotel in Syracuse, NY.

Come learn, connect, ask questions, explore resources, and gain information that may support independence, care, and quality of life.

Whether you are an adult living with Spina Bifida, a parent, caregiver, professional, ally, or community member, we would love to have you join us.

A hotel block is available for $162 per night at the DoubleTree by Hilton Hotel Syracuse.

Traveling more than 60 miles? You may be reimbursed for travel and lodging.

Registration is required to attend and the registration deadline is next week on June 23.

Register today: https://sbanys.org/event/sbanys-conference/

06/17/2026

🍻 Thank you for joining us at Community Pint Night!

Last week, the Spina Bifida Association of New York State had a wonderful evening at Frog Alley Brewing Co. with our friends at Relay for Life.

From drinks and free pizza to raffles, live music, and community support, it was a great night spent bringing people together for meaningful causes.

Thank you to everyone who came out, placed a chip in the SBANYS bucket, and helped support the Spina Bifida community. Your support makes a difference.

A special thank you to Frog Alley Brewing Co. for hosting such a fun community event!

06/17/2026

Every child deserves the joy of riding a bike. 🚲

The McLindon Family Foundation offers Adaptive Bike Grants for children and young adults with disabilities, including Spina Bifida, Cerebral Palsy, Batten Disease, CHARGE Syndrome, Down Syndrome, Hydrocephalus, Autism and more.

These grants help families overcome the high costs of therapy and specialized equipment while building confidence, strength, and inclusion in everyday activities.

How it works:
1. Submit an application by a parent, guardian, or therapist
2. Child is waitlisted by state and paired with funding
3. Phone interview to custom fit the bike
4. Complete forms for bike order and media release
5. Bike is shipped free for out-of-state residents
6. Delivery day celebration and post-delivery survey
7. Recycle the bike when outgrown so another child can ride

Deadline: Rolling
Eligibility: Must see a physical or occupational therapist

Learn more: https://www.mclindonfamilyfoundation.org/how-it-works
Email: [email protected]

06/16/2026

Recognizing changes in the body over time is an important part of long-term health for men with Spina Bifida.

The Spina Bifida Association’s Men’s Health Guideline emphasizes regular monitoring and routine evaluations to help support early awareness of health changes and guide appropriate care when needed.

Changes to be mindful of may include:
• Shifts in energy or overall wellbeing
• Changes in physical strength or function
• Differences noticed during routine checkups
• New or ongoing symptoms over time
• Changes in lab or screening results when tested

Staying aware of your body and attending regular medical visits can help support proactive, personalized care throughout adulthood.

Learn more: https://www.spinabifidaassociation.org/blog/mens-health/

06/15/2026

Understanding how hormone levels are monitored is an important part of long-term health care for men with Spina Bifida.

Hormone health is an important part of overall wellness and may be evaluated when clinically appropriate.

The Spina Bifida Association’s Men’s Health Guideline highlights the importance of ongoing medical evaluation, including awareness of hormone related health conditions such as hypogonadism

Monitoring may include:
• Routine checkups with healthcare providers
• Discussion of symptoms and health changes
• Physical examination during annual visits
• Blood testing when recommended
• Follow up based on individual health needs

In general, hormone health may be monitored through:
• Routine clinical evaluations
• Review of symptoms and overall health changes
• Physical examinations during regular checkups
• Blood tests when clinically indicated
• Ongoing follow up with healthcare providers

Because each person’s needs are different, monitoring is always individualized and guided by a healthcare professional.

Learn more: https://www.spinabifidaassociation.org/blog/mens-health/

06/14/2026

Voices of the Spina Bifida Community

Meet Paul

Paul is 23 years old and lives in Hempstead, New York. He is a man living with Spina Bifida whose story reflects resilience, discipline, and the ability to keep moving forward through life’s challenges.

One of the biggest challenges Paul has faced is undergoing more than 90 surgeries. After each surgery, he has remained determined to come back stronger than before. That mindset has carried him through difficult moments and helped shape the person he is today.

Paul also wants people to understand that Spina Bifida is not the same for everyone. As he shared, Spina Bifida is often known as the “snowflake disability” because each person’s experience is different.

Living with daily accessibility challenges has taught Paul how to problem-solve, adapt, and navigate the world with determination. Those experiences have helped him become someone who does not give up, even when he faces obstacles.

The support that would make the biggest difference in Paul’s life is understanding. He hopes people will take the time to recognize the challenges he faces and not judge him based on assumptions.

Paul describes himself as resilient, determined, and adaptable. His story is a reminder that strength is not only shown in big moments, but also in the daily choice to keep going.

If you would like to be featured in an upcoming Community Spotlight, we’d love to hear from you! Adults living with Spina Bifida, as well as parents of a child living with Spina Bifida, are welcome to share their stories.

Share your story here: https://sbanys.org/community-testimonials/

06/13/2026

This Community Health Improvement Week, we’re highlighting how ongoing medical care can boost quality of life for men with Spina Bifida. Regular checkups, preventive screenings, and continuous care help support long term health, independence, and wellbeing.

Benefits of ongoing care include:
• Early detection of potential health concerns
• Routine monitoring of urinary, hormone, and overall health
• Personalized care plans that meet individual needs
• Better long-term health outcomes and quality of life
• Empowerment to take an active role in health

Prioritizing consistent medical care is a key step in living well with Spina Bifida.

Learn more: https://www.spinabifidaassociation.org/blog/mens-health/

06/13/2026

🚨 Registration reminder! 🚨

SBANYS’ third annual conference is just around the corner, and we want you to be there.

Join us on Saturday, July 25 at the DoubleTree by Hilton Hotel in Syracuse, NY for a day focused on learning, resources, support, care, technology, equipment, services, and daily living for the Spina Bifida community.

Registration is required to attend, so now is the time to secure your spot.

Registration Deadline June 23rd

A hotel block is available for $162 per night at the DoubleTree by Hilton Hotel Syracuse.

Traveling more than 60 miles? You may be reimbursed for travel and lodging.

Make your plans and register now: https://sbanys.org/event/sbanys-conference/

06/12/2026

“A headache is not always ‘just a headache.’”

For many people with Spina Bifida and shunted hydrocephalus, a headache may be more than temporary discomfort. It can be a warning sign of shunt malfunction. Recognizing symptoms early can make a critical difference.

Possible signs of shunt problems may include:
• Headache
• Nausea or vomiting
• Seizures
• Changes in balance or coordination
• Worsening speech or swallowing difficulties
• Changes in bladder or bowel function

Because symptoms can vary from person to person, families and healthcare providers are encouraged to pay close attention to changes from an individual’s usual pattern and seek medical guidance when concerns arise.

If these symptoms occur or worsen, contact a healthcare provider or neurosurgical team for guidance. In urgent situations, seek emergency medical care.

During National Headache Awareness Week, help spread awareness and education about hydrocephalus, shunt malfunction, and the importance of early recognition.

This information does not constitute medical advice for any individual. As specific cases may vary from the general information presented here, SBANYS advises readers to consult a qualified medical or other professional on an individual basis.

Learn more:https://sbanys.org/wp-content/uploads/2024/02/Hydrocephalus-and-Shunts.pdf

Address

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

Telephone

+15183999151

Website

http://www.sbanys.org/

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