Spina Bifida Association of New York State

08/16/2026

Support for parents begins early.

The Spina Bifida Association's Family Functioning Guideline emphasizes the importance of providing families with support, education, and resources from the very beginning of their journey.

Early interventions may include:
• Connecting families with the Spina Bifida community and support groups
• Providing information about Spina Bifida, treatments, and caregiving needs
• Offering ongoing counseling and emotional support when needed
• Assessing for postpartum depression and parental adjustment
• Helping families access financial, community, and support services
• Teaching parents how to advocate for themselves and their child

Early support can help families build confidence, strengthen coping skills, and navigate new responsibilities with greater knowledge and support.

If you are expecting a baby with Spina Bifida or have recently welcomed a child with Spina Bifida, SBANYS offers resources and information to help families navigate the early stages of the journey: https://sbanys.org/expectant-and-new-parents/

Learn more from the Spina Bifida Association's Family Functioning Guideline:
https://www.spinabifidaassociation.org/blog/family-functioning/

08/15/2026

Welcoming a new baby comes with joys, adjustments, and challenges.

The Spina Bifida Association's Family Functioning Guideline highlights the importance of assessing for postpartum depression and supporting parents during the early months after birth.

Support may include:
• Education about Spina Bifida and available treatments
• Access to support groups and community resources
• Ongoing counseling when needed
• Assistance navigating services and family supports
• Connections to the Spina Bifida community

Seeking support early can help families build on their strengths and adapt to new responsibilities during this important stage of life.

You are not alone. If you are pregnant or have recently welcomed a baby and need emotional support, the National Maternal Mental Health Hotline is available 24/7.

• Call or text: 1-833-TLC-MAMA (1-833-852-6262)
• Free and confidential
• Available in English and Spanish
• Connects families with counselors, local support groups, organizations, and additional resources when needed

Learn more about the National Maternal Mental Health Hotline:
https://mchb.hrsa.gov/programs-impact/national-maternal-mental-health-hotline

If you are expecting a baby with Spina Bifida or have recently welcomed a child with Spina Bifida, SBANYS offers resources and information to help families navigate the early stages of the journey: https://sbanys.org/expectant-and-new-parents/

Learn more from the Spina Bifida Association's Family Functioning Guideline:
https://www.spinabifidaassociation.org/blog/family-functioning/

08/14/2026

📢 Do not miss the opportunity to make your voice heard.

New Yorkers with lived experience, patients, caregivers, healthcare providers, and clinicians are encouraged to speak up about treatment access, medical innovation, and insurance barriers.

Have insurance denials, prior authorization requirements, or high out-of-pocket costs delayed or prevented needed care? Has an innovative treatment improved your health or extended your life?

Your story can help members of Congress better understand why timely access to care matters and where healthcare reforms are needed.

Written and recorded testimonials will be accepted through Friday, August 28, 2026.

Share your story: https://docs.google.com/forms/d/e/1FAIpQLSfSVKh9Fsx4fG83a3XKfUKCyDgmXroWsLVMjzoH2LzE499FGA/viewform

Please review the consent and privacy notice before submitting. This form is not HIPAA-compliant.

08/13/2026

The countdown is on! Yankees Game Day with SBANYS is just 10 days away! ⚾

Only 27 tickets are left to join us at Yankee Stadium on Sunday, August 23, as the Yankees face the Toronto Blue Jays at 1:35 PM.

Spend the afternoon enjoying baseball, ballpark food, and time with the SBANYS community.

Tickets are $85 and include a $25 food and drink voucher.

SBANYS has ADA-accessible seats in Sections 330, 331, and 333, along with standard stadium seats in Section 331. SBANYS will do its best to keep families, friends, and groups seated together.

🎟️ Purchase your tickets today: https://www.paypal.com/ncp/payment/SD8UH2VMZTVD8

08/12/2026

On International Youth Day, we are celebrating the importance of creating spaces where children and young people feel included, supported, and welcomed.

Kids Camp was more than an activity space. It was part of what made SBANYS’ Conference Weekend family-centered and supportive.

While parents and caregivers attended conference sessions, children had the chance to enjoy games, crafts, therapy dogs, and fun activities in a welcoming environment.

Creating spaces like Kids Camp matters because families should be able to access education, resources, and community support while knowing their children are included in the experience.

Thank you to our interns who helped make Kids Camp possible and helped create a positive experience for the kids in attendance.

Thank you to our Kids Camp granters Stewart's Shops Holiday Match & News Radio 103.1 & 810 WGY Christmas Wish Campaign

08/12/2026

📣 Support more of the Spina Bifida community while saving 20% on sponsorship!

Businesses and organizations that sponsor the Syracuse Walk-N-Roll or the Mid-Hudson Walk-N-Roll can receive a 20% discount when they also sponsor the Dare to Dream Gala on November 7, 2026.

This is an opportunity to support SBANYS events across New York State while helping us provide programs, education, advocacy, and resources for people with Spina Bifida and their families.

Interested in becoming a sponsor?
Syracuse Walk-N-Roll: https://charity.pledgeit.org/syracusewnr

Mid-Hudson Walk-N-Roll: https://charity.pledgeit.org/midhudsonwnr

For more information about the combined sponsorship discount, email our office [email protected]

Presented by Byram Healthcare

08/11/2026

08/11/2026

⛵ Thank you for sailing with us!

SBANYS had a wonderful time at YMCA Camp Chingachgook with Y-Knot Sailing for a day of FREE adaptive sailing.

This event gave members of our community the chance to get out on the water, try sailing, and enjoy an accessible recreation experience. For some sailors, it was their first time sailing, which made the day even more special.

08/11/2026

🚤 ⛷️ Looking for a new adaptive recreation experience this summer?

The Adaptive Water Ski Clinic is coming to Scotia on Saturday, August 22, bringing adaptive water skiing to the Mohawk River for individuals of ALL ages and ANY disability.

The Webster Water Ski Collective and Electric City Water Ski Show Team will provide adaptive sit skis, trained assistants, specialized equipment, and support to help participants enjoy their time on the water.

📅 Saturday, August 22
⏰ 9 AM to 12 PM and 1 PM to 4 PM
📍 5 Schonowee Ave, Scotia, NY 12302
💵 $40 registration
👕 Commemorative T-shirt included
🥪 Lunch and snack details TBD

All participants must complete the registration questionnaire and receive approval from the Safety Coordinator before participating.

Life jackets are required. Bring your own if possible, although extras will be available and proper fit will be checked.

Register today: https://newenglandwaterski.org/events/electric-city-adaptive-ski-clinic-scotia-ny-august-22-2026/

08/10/2026

Families affected by Spina Bifida often demonstrate remarkable resilience. At the same time, supporting parental wellbeing is an important part of supporting the entire family.

The Spina Bifida Association's Family Functioning Guideline notes that some parents may experience mental health challenges as they navigate caregiving responsibilities, family life, and the demands of managing a complex medical condition.

These challenges may include:
• Sleep disruption
• Anxiety
• Feelings of isolation
• Emotional distress and lower quality of life
• Depression
• PTSD

The guideline also identifies factors that may contribute to increased stress, including:
• Higher caregiving demands and medical complexity
• Single-parent households
• Economic disadvantage
• Additional life stressors that create cumulative risk
• Higher perceptions of child vulnerability

Understanding these factors can help families, healthcare providers, and support networks recognize when additional resources or support may be beneficial.

Seeking support is a sign of strength and helping parents care for their own wellbeing can strengthen the entire family.

If you are expecting a baby with Spina Bifida or have recently welcomed a child with Spina Bifida, SBANYS offers resources and information to help families navigate the early stages of the journey: https://sbanys.org/expectant-and-new-parents/

Learn more from the Spina Bifida Association's Family Functioning Guideline:
https://www.spinabifidaassociation.org/blog/family-functioning/