1 Spina Bifida Association
2 cross-country flights
3 days of leadership training
18 new friends
Floods of memories.
Fried chicken and donuts.
I am back in D.C.!!
(Okay, I was there a week ago. It's taken me a while to collect my thoughts)
|I feel like I look like my dad in this picture...classic Garrett squint|
Some people know that I am a member of the Northern CA chapter of the Spina Bifida Association. What many people don't know is what the Spina Bifida Association actually does. Truth be told, prior to my weekend leadership institute in DC I was one of those people. Here's some highlights of super important things that the SBA is doing right now:
Spina Bifida Problem: Expectant mom goes in for 20 week ultrasound and is told her baby has spina bifida and is given options. Option A: Terminate. Your baby will be a "water head" and have "poor quality of life." Option B: If you make the decision to keep your baby, they will be paralyzed and have brain damage.
What SBA is doing about this: SBA is working with the Michigan chapter to pass a bill in Michigan (and hopefully all states, eventually) that requires doctors to provide current, accurate information about spina bifida to newly-diagnosed parents.
Spina Bifida Problem: Kid with spina bifida goes to a well-visit with his pediatrician who asks ignorant questions about spina bifida and doesn't address pertinent issues like bowel/bladder continence or non-verbal learning disability.
What SBA is doing about this: SBA brought together clinics and health professionals to update the Spina Bifida Health Care Guidelines which outline the key areas of clinical and psychosocial care needed for the spina bifida community. Due to come out next year, I will be able to print out take the guidelines for Evan, age 5, to his pediatrician to ensure that all areas of concern are being monitored and addressed by his primary care doctor. Doctor should also be able to access these guidelines via the Health Care Guidelines app.
Spina Bifida Problem: Johnny goes to ILoveSB Clinic where his doctors monitor his kidneys via ultrasounds every 6 months. Sally goes to SBisgreat Clinic where her doctors have cathed her from birth "because most people with SB need to be cathed eventually." Peter goes to SBrocks Clinic where the doctors prescribe medication to all children with spina bifida for both bladder and bowel continence. Urologic care for each of these children is determined by the doctors' preferences rather than by proven practices that best protect their kidneys and best promote continence.
What SBA is doing about this: SBA helped create the very first urologic protocols for treatment of spina bifida that are currently being tested by five clinics. Once they are shown to be effective, they will be closer to requiring these protocols to be followed by all doctors nation-wide.
These things all matter and make a difference to me and my family. They matter for the health and increased life-expectancy of people with spina bifida. When you donate to SBA via the Walk-n-Roll or otherwise, you are furthering each of these projects in addition to continuing social gatherings for our local chapter and funding my attendance at important leadership institutes that teach me how to advocate for my child. Thank you!
Here's Evan's Walk-N-Roll page: Team Rock Your Socks!