Redefining Spina Bifida

Redefining Spina Bifida

From Redefining Spina Bifida

Help support a group of professional photographers who are all committed to helping improve the perception of spina bifida, the most common permanently disabling birth defect.

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Update #1

over 2 years ago

For the past year our team of volunteer photographers have been sharing their photography with the hopes we might somehow help improve the perception of spina bifida. We've done a considerable amount of work and research. Each of us has experienced a spina bifida diagnosis personally. We know so much is lacking. Many patients who receive the diagnosis either receive little information, outdated, or inaccurate information about spina bifida.

In 2015, patients should not be receiving outdated information that is more than 20-30 years old. We strongly believe that newly diagnosed parents should receive information that tells a family not just what challenges a person with spina bifida may face - but helps them understand what life with spina bifida can be like. The world deserves to know just how much individuals with spina bifida can do and how amazing their lives can be. In less than a year we've proven this work is needed - we now have thousands of families following our work and sharing just how many problems many have also experienced personally with the diagnosis. We are committed to improving resources and helping the world better understand this birth defect that so many still know so little about.

We hope you'll consider supporting our cause - we've begun to plan many great ideas - but many are not possible without support. Consider making a contribution and sharing our efforts with your friends and family.

More Info

Five years ago our founding photographer, Amanda Kern, was told her son would be born with spina bifida. It was a day where she learned how much would be "wrong" with her unborn child and was sent home to learn from photocopied handouts that were all 20-30 years old and left with decisions of whether her family would continue with their pregnancy. In an attempt to learn more about spina bifida she became more terrified searching online and found very little hope through the resources available to newly diagnosed parents. She came very close to giving up but her family elected to give their son a "chance" for him to prove what he was capable of.

From the moment Chance was born - Amanda knew his life held great purpose and shortly after his birth she began to volunteer to do photography to create awareness of spina bifida. She's devoted so much of the last five years of her life advocating, educating and helping bring hope and support to families who are affected by spina bifida.

Last year she learned of a new family who just had a baby and the grandmother, Tammy Bunn, was also a photographer. Shortly after Tammy's grand daughter was born she learned of the awareness photography work Amanda had been doing. Tammy was touched and seeing the spina bifida photography was the first time she felt hope and optimism for her granddaughter - because all she had learned prior to her grand daughter's birth was lead her to fear the challenges her granddaughter might face. Through the photographs she was able to see that their lives do hold so much hope. Tammy expressed an interest in volunteering to do similar photography work in her area.  Within the following week Amanda and Tammy connected with several other highly talented photographers who were equally interested in using their talents to improve the perception of spina bifida and help create awareness of this birth defect that so many around the world still know little about.

In November 2014 our group, 'Redefining Spina Bifida' formed and began sharing our work. Within a short time we've grown a strong following - reaching nearly 8,000 followers in over 45 different countries. Over the past year we've done an enormous amount of research and work and this past May our group was formally recognized as a non-profit organization. We've planned clear goals and projects that we hope to achieve, but we will need support to help make some of these amazing ideas reality.

Through our photography we intend to share work and stories of families affected by spina bifida to help advocate, educate, and improve resources available. Currently most information available to parents is outdated or inaccurate or filled with tons of medical jargon that does not truly help a family or society understand what spina bifida is. Currently many medical professionals deliver a diagnosis in a way that never shows what a child with spina bifida may look like or what potential thier lives may hold. We aim to not just bring optimism but share the reality of what life with spina is like. With your support we can help improve the world's perception of spina bifida.

We think it's important to communicate and be transparent with our followers regarding our goals - with the hopes that this may help you better understand our goals and need for support - here are some of the priorities we have in the year ahead:

  • Continue to volunteer photographing families affected by spina bifida and sharing stories online.
  • Launch our organizations branding and web site to help us spread the word about the work we're doing.
  • Create a resource for new parents who receive the diagnosis that helps share more about spina bifida than just the medical challenges. Newly diagnosed families deserve to hear what living with spina bifida could be like.
  • help improve the public and media's perception of spina bifida - which includes partnering with valuable organizations who will help us create more awareness of spina bifida. Improve media's exposure to spina bifida.
  • Connect with medical professionals to present on spina bifida, distribute material and educate.  
  • Work towards improving search results for spina bifida on search engines, online resources and social media.

We hope you'll join us in supporting this initiative - we assure you amazing things are ahead. Together we can redefine the world's perception of spina bifida.

Redefining Spina Bifida is a non-profit organization with a 501(c)(3) tax-exempt status.

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Redefining Spina Bifida posted a new update:
over 2 years ago

Update #1

For the past year our team of volunteer photographers have been sharing their photography with the hopes we might somehow help improve the perception of spina bifida. We've done a considerable amount of work and research. Each of us has experienced a spina bifida diagnosis personally. We know so much is lacking. Many patients who receive the diagnosis either receive little information, outdated, or inaccurate information about spina bifida.

In 2015, patients should not be receiving outdated information that is more than 20-30 years old. We strongly believe that newly diagnosed parents should receive information that tells a family not just what challenges a person with spina bifida may face - but helps them understand what life with spina bifida can be like. The world deserves to know just how much individuals with spina bifida can do and how amazing their lives can be. In less than a year we've proven this work is needed - we now have thousands of families following our work and sharing just how many problems many have also experienced personally with the diagnosis. We are committed to improving resources and helping the world better understand this birth defect that so many still know so little about.

We hope you'll consider supporting our cause - we've begun to plan many great ideas - but many are not possible without support. Consider making a contribution and sharing our efforts with your friends and family.

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