Part of what I need (and am being required) to do is to fund raise in order to ensure the transplant center I can meet the economic demands of transplant. I spent more than a week writing an appeal letter to send out to my friends and social networks. After a lot of research, I decided to have the NTAF help me with fundraising, but that is another story.
So it has been a back and forth thing. It started out 4 pages long and ended up at one page. I sent it several times to the Patient Services Manager at NTAF with whom I am working. The IRS is very picky about how things are phrased so that NTAF and I stay within the guidelines.