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Home
About
About Us
Chapter Reports
Spina Bifida
Spina Bifida
Doctor Database
Expectant and New Parents
Services
Support and Programs
Education
Advocacy
News
Community Testimonials
Get Involved
Awareness Month
Events
Ways To Give
Volunteer
Shop
Contact Us
Donate Now
Share Your Story
Sharing Real Stories to Inspire Change and Drive Support for the Spina Bifida Community.
First Name
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Last Name
What is your age?
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What city/state do you live in?
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Are you an
*
Individual Living with Spina Bifida
Parent/Caregiver/Ext. Fam
Practitioner/Healthcare Provider
Donor/Supporter
Other
What is your relation to the spina bifida community/individual in the community?
Email
*
If you are an individual living with Spina Bifida, please answer one or multiple of the following prompts:
1) Tell us about a time you overcame a challenge related to Spina Bifida. 2) What are some misconceptions people have about living with Spina Bifida? 3) What achievements are you most proud of — big or small? 4) How has your condition shaped the person you are today? 5) What kind of support or accessibility change would make the biggest difference in your life? 6) What are three positive attributes to describe yourself?
If you are a parent/caregiver/extended family member, please answer one or multiple of the following prompts:
1) What does a day in your life as a parent/caregiver of a child with Spina Bifida look like? 2) How has access to medical care, therapy, or mobility aids impacted your child’s life? 3) What has your child taught you through their journey with spina bifida? 4) Talk about the financial, emotional, or physical tolls that aren’t often visible to others. How could support make a difference? 5) Dispel common myths or misunderstandings. Speak from experience to help others understand Spina Bifida and its impact.
If you are a practitioner or healthcare provider, please answer one or multiple of the following prompts:
1) What advancements in care have made a difference in the lives of those with Spina Bifida? 2) As a professional, what do you wish the public understood better? Correct common misconceptions or share a powerful truth. 3) Explain why supporting families beyond the clinic matters—why donations, community programs, and long-term care funding are essential. 4) Without breaching confidentiality, tell a story about a family whose courage or love left a lasting impression on you.
If you are a donor, supporter, or other, please answer one or multiple of the following prompts:
1) What inspired you to donate to this cause? Was it a personal connection, a story, or a moment that moved you? 2) Share what you didn’t understand about spina bifida before you got involved—and how your perspective has changed. 3) Talk about an experience where you saw the spina bifida community come together—at an event, fundraiser, or online—and why that sense of unity matters.
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I give permission for my picture and story to be utilized by the Spina Bifida Association of NYS as they see fit for legitimate purposes (emails, social media, website, etc).
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