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.
It was an interesting day, to say the very least. I had what I would call a brief cameo appearance at Valencia (Community College) today, to meet with a small group for a project we’re working on. Afterward, Mom and I went directly home to get ready for tonight’s event, the annual Art of the Vine fundraiser for New Hope for Kids.
You might recall New Hope for Kids as the organization that made my dream of meeting Bill Hemmer come true! Indeed, my wish was an example of “a gift that keeps on giving,” because Bill and I remain in touch, I’m now a blogger pursuing a career in the journalism industry, and I love to volunteer at events for NHFK and meet interesting people.
God has really blessed me so much in my life, and that’s why I enjoy paying it forward. Plus, it’s fun, so it’s really not much of a sacrifice, is it?
So, we got home really late, and now I’m blogging.
Last night, I started a Facebook Fan page for “Holdin’ Out!” Remember, the multi-fold mission here is to generate public awareness of spina bifida, to educate others about what spina bifida is, and of the many ways it can affect people, and also to provide an open forum for anyone– people with spina bifida, their relatives, loved ones, friends, caretakers, health care professionals, and supporters– to discuss the many issues surrounding spina bifida.
Right now, we are up to 69 fans, and going strong. That’s not a disappointment– that’s an achievement! Why, just this morning we only had about 19 fans. Thanks, everyone! You’re really making the difference. Now, if I could please just get all of you to fan us, if you haven’t already, and then, on the Fan page, on the left-hand side, click the link that says “Suggest to Friends,” and select everyone on your list! Let’s make everyone a part of this.
Thanks especially to Amber Evans for the idea. I can’t believe I didn’t think of it before.