I have not checked lately, but COTA (Children's Organ Transplant Organization)--cota.org handles the funds raised for children & adults with CF. They keep no portion of the funds raised and as a matter of fact, they chip in money when you get to certain levels. All donations are tax deductible and if you do happen to pass on, your funds will go to another transplant person (my guess is this is where they get their funds to chip in when you reach those levels).I think most people that donate would prefer the money go to your survivors, but also would be glad to see that money go to help someone else. I think the reason the money would not go to your family is because of the tax deductible aspect.
What Transplantmommy did works too and seems the easiest to me, however, donations are normally not tax deductible unless they have filed with the IRS for a non-profit status and will then file returns showing donations, how money spent, etc.
If/when I get listed for a transplant we would have to relocate, husband would have to quit or switch jobs to another city, etc. so I know what you mean about these expenses not covered by insurance<img src="i/expressions/face-icon-small-confused.gif" border="0">
Keep us posted on what you decide to do.