Last Updated on Thursday, 07 April 2011 22:06 Written by Administrator Monday, 26 July 2010 12:28
Together We Make The Difference!
They say that "no man is an island" and neither is any woman! Life is not meant to be done all by one's self......
as women we know this better than our counterpaerts. My mom knows this too. As a military wife every three or four years she would find herself alone in a new community. She could have let this become a reason to attempt to live life without the support of her neighbors but she didn't. What she did was to be open and pursue connection and friendship with those other women who could help guide her through becoming an integral part of the neighborhood and community as a whole while inviting others to do the same.
Her modeling this way of being helped catapult me into adulthood. I moved out of my parent's home just months after graduating high school. This may not seem unusual to many, but because I am a woman with a disability, it was a testament of successful parenting, leading to positive independance that all of us deserve. I was born with Spina Bifida over 45 years ago. if I had been born much earlier in the decade I may not have survived my own birth. But, I lived and am in a deep state of gratitude. This gratitude has left me with the purposeful desire to improve the lvies of "my neighbors"-my community of individuals and families affected by Spina Bifida.
Over 250,000 Americans are in the Spina Bifida Community. As estimated 70,000 to 180,000 plus people in the United States are currently living with Spina Bifida, the most common permanently disabling birth defect. Spina Bifida is a neural tube defect that happens in the first month of pregnancy, often before women realize they are even pregnant, when the spinal column doesn't close completely. There are 60 million women at risk of having a baby born with Spina Bifida. Every day an average of eight babies are born affected by Spina Bifida or similar birth defect of the brain and spine. Each year about 3,000 pregnancies involve these birth defects.
The effects of Spina Bifida are different for every person. Up to 90% of children with the worst form of Spina Bifida have hydrocephalus (fluid on the brain) and must have surgery to insert a "shunt" that helps drain the fluid. Other conditions include full or partial paralysis and learning disabilities such as ADHD.
Again, I was very lucky that my situation is/was fairly mild-I do use a wheelchair for mobility but I am otherwise able to live fully independently. Not only that, but I am now the Executive Director of the Spina Bifida Association of Washington State and get to live my purpose everyday! This may seem a lofty endeavor but I too am not alone! I have a wondrful board of individuals who are passionate about supporting our community. Our mission is two-fold-educating women about preventing birth defects and then supporting the community who are directly affected by Spina Bifida , we invite you to join YOUR Community! If you are not directly affected by Spina Bifida but are in the medical or special education fields we also invite you to bring your talents our way because, as our motto states, "together we make the difference" in our community!
Do your part and educate yourself on support and advocacy, visit www.sbaws.org today!
Our nationally sanctioned annual fundraising event, the Walk and Roll for Spina Bifida is on April 30th, please visit our website to find out how to join as a team or individual. Volunteers and sponsors are welcome! All proceeds go towards our missins of Spina Bifida prevention and serving those whose lives are affected by Spina Bifida.