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Recent Posts
Category Archives: Disability Advocacy
My Story
Backstory to what you’re about to read: Regular readers of this blog know I was born with Spina Bifida. I wrote this after I came back from my first Spina Bifida conference in 2003. Before that, I had never even … Continue reading
My Friend Tom
Tom was the first adult who had Spina Bifida (like me) that I had ever met. It took 27 years and a trip to the national conference for me to meet the person who was at that time the president … Continue reading
Posted in Disability Advocacy, In memoriam
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Spina Bifida FAQ’s: Everything You Ever Wanted To Know About SB (updated 10/23/14)
October is Spina Bifida Awareness Month. For those that don’t know, Spina Bifida is the #1 permanently disabling birth defect in the United States. More people are affected by it than muscular dystrophy, multiple sclerosis, and cystic fibrosis *combined*. I … Continue reading
Posted in Disability Advocacy
Tagged Arnold Chiari Malformation, Chiari II, chronic illness, disability advocacy, disabled, executive function, fetal surgery, hydrocephalus, inspiration porn, latex allergy, learning disability, myelomeningocele, neural tube defect, nld, nld's, nonverbal learning disabilities, nvld, shunt, special needs, Spina Bifida, Spina Bifida Occulta, stella young, syrinx, tethered cord, The Hand of Hope, ventriculoperitoneal
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