Yesterday, I had a great discussion with Marissa of the CJD Foundation. It turns out she had already found my blog, and was therefore expecting my phone call. We had a good conversation about what I am trying to do, what the CJD Foundation is trying to do, and what they are legally able to do within the parameters of their non-profit designation.
A main point I took away from this conversation is that if I want to turn my advocacy efforts into a paying position, which is ultimately my goal, I will need to form my own organization. This being the case, I am going to need to find a lawyer with experience in non-profits to determine exactly what designation I will need to obtain from the IRS. While I suspect it will still take considerable time before I am able to raise enough money to pay myself a salary, getting the ball rolling on forming the organization will hopefully speed things up down the road.
Today, I spoke with contacts at both the CDC and the National Prion Disease Pathology Surveillance Center in an effort to find a detailed list of state reporting requirements. I was not able to get specifics from each state, but I now have in my posession a list of whether or not the state has reporting requirements. It appears I am going to need to call each state's health department individually to find out more specifics. It's going to take some time, but I really think having this information will be beneficial to determine where we need focus our efforts.
Things seem to be moving along nicely, and I am very thankful for the positive reception I have received so far. I am looking forward to being involved in something I care so much about!
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment