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.
There’s so much to tell all of you, but most of it will unfortunately have to wait until tomorrow! I was working on a class project when I came home, and so now I’m blogging late.
I will start off with the “political” aspect of my entry tonight. Rep. Denny Rehberg of Montana is a self-described “life long steward of the land,” and is on several wildlife/nature related committees. These include the Forest Caucus, and he is former chair of the Drought Advisory Committee. He’s also on the Firefighter Caucus, and on the Congressional Rural Caucus.
Most impressively, though, he is State Chair of the Muscular Dystrophy Association. Rep. Rehberg is also said to have chaired various other health care initiatives.
I guess you could say I had a whirlwind day– and I experienced it all in less than two hours! After a busy weekend, I decided I needed to make time to head over to the Hispanic Business and Consumer Expo at the Hilton Orlando today.
Dad dropped Mom and me off at the Hilton around 2 p.m., and the expo was scheduled to close at 4 p.m., so we had to get moving! We met briefly with Luis (Paola’s older brother, who has spina bifida), his mother (Sonia) and his little brother (Leo), but we could barely have a conversation because the plena music was so loud!
With expert assertiveness, Sonia led us to the Univision Orlando booth, where I met sports reporter Addiel Gómez. I told him my story, gave him a flyer, and got an autographed picture of him (plus, a picture with him, which I’m sure I’ll be sharing soon!).
Afterward, our friends had to leave, but we stayed, and met locally famous lawyer William McBride, and since they were holding on-the-spot auditions for a commercial with him, naturally, I signed up! I read a brief line on camera, and then proceeded to make my “Hero pitch” as soon as the cameras were off. Mr. McBride introduced me to his assistant, who told me he knew someone from Univision who might help. Ironically enough, I was introduced to Addiel again!
Mr. McBride’s assistant assured me he would “make sure they do a story about you.” (I guess we’ll wait and see!).
As we passed the booths, we came across another interesting one. Anthony Suárez, a lawyer and former politician-turned-radio host, was hosting his show live from the expo! He was interviewing a young couple who had hosted a bone marrow donation drive. During a break, I got his attention and shoved a flyer into his hand with a smile on my face. He skimmed the bullet points on my flyer, looked at me, and said, “I’m going to interview you, right after them!”
I was like “What!?” I’ve only had one other experience with live radio! (Check out my “Holdin’ Out in the News” tab for the link to my interview on One Voice Radio.) But, as is my fly-by-the-seat-of-my-pants demeanor, I took the opportunity and ran with it. The interview was brief, but I got to mention the high incidence of spina bifida in the Hispanic community, and how folic acid consumption isn’t 100 percent reliable for prevention. Mr. Suárez said (while on the air) that he would invite me again soon, to speak to politicians and urge them to make spina bifida a priority on their agenda! (Excuse me, I’m having a total 13-year-old, OMG, freak-out fest!)
Of course, I mentioned my current “campaign” with the Congressional Spina Bifida Caucus, and how seldom it is mentioned in the media. I left that interview with a big smile and very high hopes.
There’s unbelievable so much more to tell, but it will have to wait. My bed is calling me– screaming, actually. And I have to listen to it…
© 2010, Laura. All rights reserved.