Spina Bifida Association of Florida

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Spina Bifida Association of Florida

To build a better and brighter future for all those impacted by Spina Bifida. Become a member. SBACFL Membership is free!

https://sbacentralflorida.org/become-a-member/

06/23/2026

**Research Opportunity: Spina Bifida and Menopause**

Researchers at the University of Derby are inviting women living with Spina Bifida to participate in a research study exploring experiences during the menopause journey.

This study aims to better understand how women with Spina Bifida experience and manage menopause-related symptoms. Researchers will also examine the connections between mobility, attitudes toward menopause, social support, spirituality, and menopausal symptoms.

Participants will complete an anonymous online survey that takes approximately **20 minutes** to complete.

To participate, individuals must:
• Be assigned female at birth
• Be 35 years of age or older
• Have, or have previously experienced, menopause-related symptoms (such as hot flushes, irregular menstruation, mood changes, or other related symptoms)
• Meet the diagnostic criteria for Spina Bifida
• Not require permission from a legal guardian to participate
• Be able to read and write in English

If you meet these criteria and would like to participate, scan the QR code or visit the survey link for more information:
https://vist.ly/58r4e

The survey is anonymous. For questions about the study, contact research student Jo-Anne Albertsen at [email protected]

Please consider sharing this opportunity with others in the Spina Bifida community who may be eligible to participate.

06/22/2026

✈️ Planning ahead for international travel?

Join us for an upcoming webinar on accessible travel and learn practical tips for planning, booking, budgeting, and navigating abroad with confidence.

📅 June 30, 2026
🕖 7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT

Register now:
https://vist.ly/58kqi

06/18/2026

Happening today! Join author and advocate Dorothy Hill Baroch, M.A., for a powerful and deeply personal conversation about Spina Bifida, disability advocacy, accessibility, and resilience.

At 88 years old, Dorothy shares the journey that began when she was told to leave her newborn son in the hospital to die — and the decades of advocacy, learning, and determination that followed. Alongside advocates Will Dickey, Jay Dashefskyy, Sonja Baker, Lourdes Mack, and Beth Bryant,, this webinar will explore disability awareness, inclusion, ADA compliance, and the importance of changing misconceptions about disability.

This is a conversation about education, empowerment, and creating a more inclusive world.

📅 Today, June 18 at 7 PM ET
📍 RSVP and join us on Zoom: https://vist.ly/58844

06/17/2026

🌟 Meet Our 2026 Sacramento Walk-N-Roll Ambassador: Cheyenna Maccarty 🌟

We’re proud to introduce Cheyenna Maccarty as a 2026 Sacramento Walk-N-Roll for Spina Bifida Ambassador!

Cheyenna is a preschool teacher and a mom to three amazing kids—Paislee, Caleb, and Allison. Her youngest, Allison, has Spina Bifida. She loves spending time with family and friends and enjoys reading. Through her role as an ambassador, Cheyenna is helping raise awareness and bring the community together in Sacramento for Walk-N-Roll.

💙 Learn more about Cheyenna’s story: https://vist.ly/585vz

👟 Join Cheyenna in Sacramento for Walk-N-Roll!
Be part of a family-friendly event that celebrates community, connection, and support for individuals with Spina Bifida.

👉 Register for Sacramento Walk-N-Roll:
https://vist.ly/585vr

Every mile makes a difference. We can’t wait to Walk-N-Roll with you! For updates, follow National Walk-N-Roll for Spina Bifida

06/15/2026

Researchers from the Children’s Hospital of Philadelphia (CHOP) recently shared updates from the long‑running MOMS Studies, which follow children born with myelomeningocele (MMC), a form of Spina Bifida. These studies compare outcomes after fetal and postnatal surgery, looking at mobility, brain development, shunt use, daily living skills, and long‑term independence.

The original MOMS Study examined fetal vs. postnatal repair, and MOMS 2 followed the same children at ages 6–10. The current phase, MOMS 3, is now tracking these individuals as teens and young adults to better understand long‑term outcomes and life experiences.

In this recorded session, CHOP team members Amy Houtrow, MD, PhD, MPH; Katie M. Schmidt, DNP, CRNP, NNP‑BC; and Amber Lauff, MPH, and SBA's Director of Research and Services, Colleen Payne, MRC:
• explain the earlier MOMS studies
• share key findings on mobility, independence, and development
• discuss the goals of MOMS 3
• outline how families can participate

Watch the full recording here: https://vist.ly/57std

To learn more about how to participate in the study, visit https://vist.ly/57st8

Children's Hospital of Philadelphia

06/14/2026

💬 Spina Bifida Adult Chat Returns June 28!
🗓 Sunday, June 28 | 3–6 PM EDT

Adults with Spina Bifida are invited to join this laid-back virtual hangout focused on connection, conversation, and community. No agenda—just time to talk with others who get it.

Hosted by Donna Jones & Will Dickey. Must be 18+.

📧 Email [email protected] for the link!

06/12/2026

📣 Make the most of your Walk-N-Roll experience with our Fundraising Guide!

Whether you're just getting started or looking to take your fundraising to the next level, the guide is filled with helpful tips and resources, including:

✅ How to register for Walk-N-Roll
✅ Personalize your fundraising page
✅ Spread the word to family and friends
✅ Creative fundraising ideas
✅ Thank and celebrate your supporters

Every dollar you raise helps support research, clinical care, education, network building, and advocacy that help build a better and brighter future for all those impacted by Spina Bifida. 💙

📖 View the Fundraising Guide: https://vist.ly/57kg4

📲 Follow National Walk-N-Roll for Spina Bifida for updates, fundraising tips, participant spotlights, and event news throughout the season!

06/11/2026

Next week, The Spina Bifida Association of the Carolinas is honored to welcome author and advocate Dorothy Hill Baroch, M.A., for a powerful webinar centered on disability awareness, advocacy, and the lived experience of families impacted by Spina Bifida.

Dorothy’s story spans nearly nine decades of resilience and advocacy after being told to leave her newborn son in the hospital to die. Through personal stories, reflections from her new book, and conversations with advocates Will Dickey, Jay Dashefskyy, Sonja Baker, Lourdes Mack, and Beth Bryant,, this webinar will explore the realities of accessibility barriers, medical trauma, inclusion, and changing perceptions of disability.

These conversations matter — because awareness leads to understanding, and understanding leads to change.

📅 June 18 at 7 PM ET
📍 RSVP and join the conversation here: https://vist.ly/57dcs

06/10/2026

❓ Have questions about Walk-N-Roll?

We've got answers! Our Walk-N-Roll FAQ document covers many of the most common questions about registration, fundraising, incentives, and more.

Whether you're joining us for the first time or you're a longtime participant, the FAQ is a great resource to help you make the most of your Walk-N-Roll experience.

📖 View the Walk-N-Roll FAQ: https://vist.ly/57b3y

🦽 Find an event near you and register:
https://vist.ly/57b48

Still have questions? We'd love to help! Contact us at [email protected].

06/09/2026

Thinking about international travel but not sure where to start?

Join us on June 30 at 7 PM ET for a practical, real-talk session on accessible travel for wheelchair users.

🎤 Guest speakers:
• Shannon Bevans, LCSW
• Mark Deschamp, Founder & CEO of 5280 Mobility

Attendees will learn about planning and booking flights, navigating airports and hotels, safety preparation, budgeting, and valuable lessons learned from international travel experiences. ✈️🌍

The session will feature honest stories, helpful tools, and practical tips designed to help travelers feel more confident exploring the world.

Whether someone is dreaming about their first international trip or preparing for their next adventure, this session offers insights and encouragement for every stage of the journey.

Register today: https://vist.ly/574hd

Address

2000 Duke Street, Suite 300
Arlington, VA
22314

Telephone

+18006213141

Website

http://www.spinabifidaassociation.org/

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