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 never ceases to amaze me that you can be following someone on Twitter for months– and not really know anything about them! I had been following this girl on Twitter for at least a few months, because she was following me, she followed my “Hydro Girls,” and I thought, “Well, she seems to know a good cause when she sees one!”
Boy, was I right about that! My friend-in-tweeting, @dutchstrong, whose name is Jenn, also Tweets for a cause of her own. Her 11-year-old brother Cameron has a smile for everyone– and a story to tell. He was diagnosed with infantile neuroaxonal dystrophy (INAD), a “degenerative disorder of the nervous system characterized by abnormalities of nerve endings […] within the brain and spinal cord […] and outside the central nervous system[…].”
Cameron “Cams” cannot walk or talk, but fortunately, he has an amazing big sister who is doing everything in her power to make sure his voice is heard. Jenn started a Twitter campaign at another handle, @tweet4cams, to help raise awareness of INAD.
Upon Cameron’s diagnosis, he was registered with Make-A-Wish Foundation. His supporters are participating as part of “Team Cams” in the foundation’s 2010 Walk for Wishes.
When frustrated as to the sometimes bumpy journey of raising awareness for spina bifida, people like Jenn are a much-needed reminder that there are other people, with other causes, that are also trying to persevere.
You can read all about Cameron and his mission on Jenn’s blog. I can assure you I will be following very closely from here on out!
And now, onto the floor of the House of Representatives! Rep. Ben Chandler of Kentucky is part of the Community College Caucus (a good one, if you ask me!), the Philanthropy Caucus (another winner!), and the Bicameral Caucus on Parkinson’s Disease (yes, that one too!).
In his home state of Kentucky, he fought to pass “Megan’s Law,” which protects women and children from sex offenders.
He’s also tough on protecting all our civil liberties. I will hopefully find out more about Rep. Chandler after I write to him.
And with that, I must leave you, for UCF calls tomorrow!