The Mission

Over the past month, I have spent a lot of time thinking and planning. I have a lot of ideas for the direction of the organization on paper and I am almost ready to start taking the next steps to really get the organization off the ground. I'll be honest, it is a bit intimidating. The process of incorporating, applying for non-profit status and developing the rules which govern the organization seem very overwhelming. That being said, the end result of knowing I did something to help others dealing with prion diseases will make it all worthwhile. I also have a lot of very supportive friends (family too) who are helping to ease the burden of things like starting a website. So, thank you guys!

Today, I want to go ahead and share the mission statement I have developed for the organization, which I intend to call the Association for Prion Disease Advocacy, or APDA. I suspect some changes will need to be made as I bring more people in on the project, but hopefully this will give you a good idea of what I am trying to do.

MISSION STATEMENT

Our mission is to provide legislative advocacy at the state and federal level for all prion disease issues. We strive to achieve this mission by increasing legislator awareness, identifying legislators sympathetic to our cause and lobbying for issues that affect prion disease sufferers, their families, research and the health of the public at large. Additionally, we will increase public awareness of prion diseases through ad campaigns, letters to the editors of newspapers and medical publications and publicizing any U.S. cases of Bovine Spongiform Encephalopathy (BSE) in cattle or variant Creutzfeldt-Jakob Disease (vCJD) in humans.

I will be posting more details to come about projects I have planned and, hopefully, the progress I am making on getting the organization started.