For the next 36 days (from March 28 to May 2), I will be contacting and writing about 36 extraordinary members of the House of Representatives. They are all extraordinary in that they form the bipartisan Congressional Spina Bifida Caucus, and so they strive to address the unique needs of the spina bifida community in the U.S. My “mission” is to write to them, and urge them to make quality of life, and not solely prevention, a priority on their agenda in Congress. It has come to my attention that education about spina bifida is critical during all the stages of development– from planning to prevent spina bifida through the consumption of folic acid, to comprehensive education about spina bifida once it is diagnosed. We need to educate, starting with the physicians and other healthcare providers, so that they will be made aware of the potential that each child with spina bifida possesses.
Apparently, the adage still rings true. “What happens in Vegas, stays in Vegas.” At least, when it comes to the Congressional Spina Bifida Caucus! It seems that, when it comes to spina bifida, mum’s the word.
In Rep. Shelley Berkley‘s case, it’s probably not a lack of interest that keeps spina bifida out of the public eye. To the contrary– perhaps, it’s that Congresspeople want to get involved in everything. That is really admirable, but we really have to remind our legislators not to stretch themselves too thin!
Rep. Berkley is a case in point. The longtime resident of Las Vegas is a member of the Bicameral Congressional Task Force on Alzheimers Disease, the Congressional Osteoporosis Caucus, the House Veterans’ Mental Health Caucus, the Congressional Kidney Caucus, the Task Force on Health Care, the Future of American Media Caucus, the Public Broadcasting Caucus, the Congressional Fitness Caucus, the Congressional Human Rights Caucus, the LGBT Equality Caucus, the Coalition on Autism Research and Education, the Congressional Gaming Caucus, and the Task Force on Education (would you believe!) to name just a few.
Again, while I admire each and every one of the legislators who choose to devote time and energy to health initiatives, I have to wonder if, with each of them doing too much, anything is getting done at all. Then again, while others are hitting the slot machines, she is on the House floor, trying to make a difference.
I know it’s probably a drag to all of you that I’m beginning to sound very cynical. I don’t doubt the good intentions of our Congresspeople. I guess I just hope that someday there’ll be “a little less conversation, a little more action please.”
Let’s hope Rep. Berkley will take positive action for spina bifida awareness!