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.
I see this Congressional Caucus as a great starting point, as they have already committed to educating their colleagues in Congress about spina bifida.
As might be the case with several of the representatives I am focusing on for the next few weeks, some of them may not be currently serving on the Congressional Spina Bifida Caucus. This is due to the fact that I am getting the names of the caucus member from a list on the Spina Bifida Association Web site, and as far as I can tell, the site was last updated in 2009. I can try to get some new, updated information about the caucus by E-mailing the SBAA, but we all know how forthcoming they have been with their resources (*cough cough* NOT!).
Besides, the real point of writing to these representatives is to directly ask them what exactly it is that the caucus does for the spina bifida community, and what role the representative being contacted is/was playing in the caucus. I plan to be direct. We really have to be “watchdogs” about our own issues. These are our issues. It’s our lives they’re dealing with. If the member in question is no longer a member of the caucus, my goal is to ask him/her why, and urge him/her to reconsider taking an active part in improving the lives of people with spina bifida.
But, let’s get down to business. Rep. Anna Eshoo of California is the Vice Chair of the House 21st Century Health Care Caucus. She’s also Co-Chair of the House Medical Technology Caucus.
Eshoo is a member of the Bipartisan Congressional Task Force on Alzheimer’s Disease, the Coalition for Autism Research and Education, the Congressional Biomedical Research Caucus, the Congressional Caucus for Women’s Issues, the Congressional Caucus on Armenian Issues, and the LGBT Equality Caucus.
Being an Assyrian-Armenian and a Chaldean Catholic, Eshoo “has worked hard to protect Assyrian Christians in Iraq from continuing religious persecution and political exclusion,” according to Wikipedia. She also defended Supervisor Tom Nolan, who is openly gay and was her opponent for her seat in Congress in 1992, when he was targeted in a “gay bashing mailer.”
It’s clear that Rep. Eshoo puts human rights first, even in the midst of an election. That is personal integrity at its best!
In other news, I spent a great part of the afternoon writing a five-page letter to President Obama. (I’m not kidding.) Okay, I had been holding off on writing to him, since I had other tasks to deal with, but now that it’s done and ready to go, I feel I’ve reaffirmed my commitment to this cause. I’ve done my part, and when the letter reaches him, he’ll have some fascinating reading material to pore over!
I may have mentioned in the past that I did write to him once before. It was shortly after he was inaugurated, and I received a nice little form letter, along with an autographed picture. I appreciated the reply, but I am hoping for more from our Commander-in-Chief.
One more thing I’d like to share with you before I sign off is an interesting article about a man with hydrocephalus who has a wireless, programmable shunt. (Thank you, Google Alerts! Or is it still Topeka?)
Please enjoy it, and have a great night!