I lost my father to sporadic CJD in October of 2007. I am sure the story of my father's illness and the unanswered questions will be all too familiar for most of you who have found your way to this site. My father's story will be told on this site, but for right now I would just like to share what my goal is by starting this blog.
I was raised right outside of Washington, D.C. I have a degree in Political Science and have spent several years working in or with state legislatures. Since the death of my father, I feel very strongly that I would like to begin doing advocacy for CJD full-time. Unfortunately, no organization exists in the U.S. that deals specifically with advocacy. Which is not to say that advocacy doesn't happen, just that there is no dedicated organization for it. This blog is my jumping off point. I am tossing around ideas (in my own head and with others) to try and figure out the most effective way to get more advocacy started, whether by working with an existing organization or by forming a new one.
The most important objective, in my opinion, is to begin working to get every state to report CJD cases to the Center for Disease Control (CDC) in Atlanta, GA. Presently, every state has their own requirements, or lack of requirements, regarding this disease. CJD is presently thought to affect roughly one in a million people each year. The actual number could be significantly higher, but we can't know for certain until the reporting requirements are in place to ensure every confirmed case is accounted for.
Other objectives are in the planning phase as well and ideas regarding them will be forthcoming. Please leave your ideas, questions and thoughts as comments. The comments will be moderated to ensure everything is appropriate. I would like for this blog to be a venue for the exchange of legitimate ideas. I appreciate your help in making that happen!
