Spina Bifida Association

06/02/2026

If you’ve ever felt overwhelmed, unheard, or unsure during your child’s IEP process, you’re not alone.

In this webinar hosted by the SBA of the Carolinas and presented by Hope Ratcliff, M.Ed., you’ll learn what makes an IEP truly effective, how to avoid common pitfalls, and how to advocate with clarity and confidence for your child’s educational success.

You’ll walk away with practical tools, clear next steps, and strategies to help ensure your child receives the supports they need to thrive.

🎥 Watch the webinar: https://www.youtube.com/watch?v=51YIB9eAbr8&t=54s

Connect with Hope: https://linktr.ee/fhratcliff

Feedback & Next Steps: https://docs.google.com/forms/d/e/1FAIpQLSc

If you’ve ever felt overwhelmed, unheard, or unsure during your chi...

05/28/2026

🎧 Bladder Buzz: The Effects of Gentamicin Bladder Instillations on Decreasing Urinary Tract Infections

Explore research on how gentamicin bladder instillations may help reduce UTIs and improve bladder management outcomes.

🎙️ Listen:

https://pubmed.ncbi.nlm.nih.gov/40095724/

05/28/2026

📚 Join the SBA of the Carolinas for a conversation with author Dorothy Baroch, M.A., as she shares stories from her new book, *A Journey Like No Other*.

Through heartfelt discussion and personal experiences, you'll hear from individuals living with Spina Bifida who have turned challenges into opportunities for advocacy, leadership, creativity, and independence. Featured guests include advocates, educators, outdoor enthusiasts, performers, and community leaders from across the country who are making a difference in their communities.

Together, we'll explore topics including disability awareness, self-advocacy, accessibility, healthcare, community engagement, and the power of resilience. You'll also have the opportunity to participate in a live Q&A with Dorothy and several individuals featured in the book.

Whether you're part of the Spina Bifida community, a family member, caregiver, advocate, or simply interested in learning more, this conversation promises to educate, inspire, and connect.

📆 June 18, 2026
🕐 7:00 PM ET
💻 Join the webinar: https://vist.ly/55tsv

05/27/2026

🎉 Meet the 2026 Walk-N-Roll Ambassadors! 🎉

We’re excited to introduce the incredible Ambassadors representing Walk-N-Roll events across the country this year:

📍 Atlanta — Chloe Cich

📍 Greensboro — Whitten Pyrtle

📍 Houston — Chris Young

📍 Los Angeles — David Aguilar

📍 Nashville — Marissa Eades

These Ambassadors help raise awareness, build community, and support SBA's mission to create a better future for people and families impacted by Spina Bifida. Stay tuned as we spotlight each Ambassador and share their stories throughout the 2026 Walk-N-Roll season!

Haven't registered for Walk-N-Roll yet? Go to https://www.spinabifidaassociation.org/walk-n-roll-for-spina-bifida/

05/26/2026

📢 Updated Webinar Link: Understanding the IEP Process

Join us for this informative webinar designed to help families better understand the Individualized Education Program (IEP) process and advocate for their child's educational needs.

🔗 Updated Zoom Link:
https://vist.ly/55jjx

Whether you're new to IEPs or looking to strengthen your advocacy skills, this session will provide valuable insights and practical tips.

📚 Share with families, caregivers, educators, and advocates who may benefit!

05/26/2026

📣 Happening Today! 📣

Join the Spina Bifida Association of the Carolinas tonight for our educational webinar:

🎓 IEPs That Actually Work: A Parent’s Roadmap to Advocacy and Student Success

📅 Today, May 26
⏰ 7:00 PM ET

Presented by Frances Hope Ratcliff, M.Ed., this webinar will help families better understand the IEP process, advocate with confidence, and support student success.

Whether you’re preparing for your first IEP meeting or looking to strengthen your advocacy skills, this session is packed with practical tools and helpful guidance.

🔗 Join the webinar here:
https://vist.ly/55h4i

We hope to see you there! 💙

05/25/2026

🌟 Do you know a child or teen with Spina Bifida?

There’s a research opportunity that may interest your family.

UTHealth Houston is looking for children and teens ages 4–17 with Spina Bifida who are currently taking medication for overactive bladder. The study is exploring a non-invasive, child-friendly treatment option called tibial nerve stimulation, which may help improve neurogenic bladder function.

Why might this be helpful?
• It’s a non-surgical, low-risk therapy option
• It may reduce reliance on medications and their side effects
• It aims to support greater independence and quality of life for kids with spina bifida

If you’d like more information or have questions, please contact:

📩 Jacqueline Waterson, Study Coordinator
📧 [email protected]
📞 (713) 797-5765

All information is confidential and only shared with the research team.

05/24/2026

Gillette Children’s Healthcare Press is proud to announce Spina Bifida, a new guide designed to help families, caregivers and professionals better understand and manage Spina Bifida across the lifespan. The book combines medical expertise, best-practice treatment guidance, and real family perspectives.

Visit the link to learn more about this resource by Gillette Children's Healthcare.

Spina bifida is a neural tube defect that results in incomplete closure of the vertebrae, muscles, and skin that normally surround and protect the spinal cord and nerves. Initial management focuses on restoring protection for the spinal cord and nerves and monitoring the brain closely.

05/22/2026

Millions of Americans rely on urological products and ostomy supplies to live healthy,
independent lives. By allowing Medicare to bid on these products, Congress is putting catheter users at risk of losing access to the supplies they need.

When the right fit is replaced with the lowest-priced product, patients pay the cost.

🔈Tell Congress: Protect access to the prosthetics patients need.
📧Send your message today: https://vist.ly/5552e

05/21/2026

So many assumptions are still made about what people with disabilities supposedly “don’t” do — and Dr. Elizabeth Scriven is here to challenge those myths head-on.

Watch this clip, then check out the full presentation to learn how ableism shows up in everyday life for people with Spina Bifida and what we can all do to help break down those barriers.

🎥 Watch the full presentation here: https://vist.ly/54zae