Faces of Spina Bifida is an online magazine that celebrates diversity among people with Spina Bifida. It’s the world's first website that brings together, in one place, the spina bifida community by creating a platform for collecting news and research articles about spina bifida. Readers are invited to chronicle their life, inspire, and make new connections.
Most of the articles and stories on Faces of Spina Bifida magazine are drawn from other news sources throughout the world.
The site features include...
- Stories about people living with spina bifida worldwide
- Research, legislative, and healthcare news
- National and regional group resources, regardless of affiliation
- Resource links maintained and updated continually
- Event announcements, hire professionals, obituaries
- Popular blogs written by families and individuals
- Videos
- News
- Popular spina bifida blogs
- Events
- a Marketplace of helpful products, books, services
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| Alyson Flynn, Publisher |
When they write and publish their own stories, they are careful to use People First Language. However, they hesitate changing the language used in the original stories because they don’t want to sugar-coat reality for their readers. Instead, they want the magazine readers to freely express “I do or don’t like how that is written.”
The new site has really created a follow among the roughly 166,000 with spina bifida in the U.S. alone.
Here is what readers are saying...
I have SB…love your site and pageDan, via Facebook
Thank you for what you do for those with SB, and Mylo patients.
Frank, via Twitter
Thank you for having this magazine and FB page! My daughter has SB L3-S3 and just turned 4. Its encouraging to see all these faces of adults and children, to know I have hope as does she to do things that she wants to do! Thanks and am really excited to keep up with all the info!!
Sasheen, via Facebook
@FacesofSB very amusing!!! Fame at last! Great website btw.
Karen, retired paralympian and one of our “Famous Faces”
I’m looking at the site and it’s giving me goosebumps! This is exactly what I’ve been looking for!
Carla, mother & agent of author Katherine The Adventures of KatGirl
I’ve been following your site for a while, lots of great info.
Kind Regards, Sara
www.spinabifidastories.com
I cannot thank you enough for including baby Dot among your Famous Faces of Spina Bifida.Indeed she is “living an exemplary life” (and she was very honored to be included alongside John Mellencamp, Hank Williams, Sr., and Frida Kahlo!). She is a remarkable little soul, and I hope her journey is an encouragement to your wonderful readers.
Alyson, thank you so much for singing Dot’s song on FacesofSpinaBifida.com, and for encouraging folks to sponsor her. We are blessed to have you and your team in the Tabby’s Place family. I have attached some even more recent photos of Dot.
Thank you again, and God bless you!
Warmly, Angela, Development Director, Tabby’s Place
I am a “fan” of your “Faces of Spina Bifida page on Facebook. I LOVE IT! I Love reading other people’s stories and feeling connected to so many wonderful people.
I appreciate the work you are doing for all of us. THANK YOU!!!
Many blessings to you, Shauna, Owner of Divine Potential
www.divinepotential.com
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