It's a sad story but whether fair or not, I can see why they received the response they did. Case in point (as mentioned) with Susan G. Komen trying to trademark pink and 'race for the cure'. I thought it was pretty ridiculous but given that there are so many charities and organizations out there who want to make money, never mind the cause, it's not surprising that this couples idea was shot down. Lot of scams out there too. Sick as that is.
It makes me also think about Apple's lawsuit to Amazon for the "Appstore".
I wish I had knowledge about law to give productive comments... but, along the lines of charities, particularly for cancer, I thought this article was very informative: http://www.time.com/time/specials/packages/article/0,28804,2075133_2075127_2075103,00.html
It brings to light how certain organizations spend the donation money (i.e. percent they give to research vs. advertising).
I applaud what the couple is trying to do and I hope they are able to keep their dream alive, but, one thing is... there are so many charities and organizations out there. There is nothing wrong with participating/donating/working to an already established organization that does give significant contributions to research.
Funding for research is EXPENSIVE. I can say I know a little bit of this because I'm in biomedical research. You have the costs of hiring personnel, buying lab equipment, lab supplies, and reagents. One instrument alone can cost over 100k, easy. Reagents for that instrument is expensive. A reagent kit can cost a couple hundred dollars; then you have to repeat that experiment. Multiply that to 10 people in ONE lab doing that. That is why we researchers are always begging for more money. We need it.
What I mean is... fundraising, no matter the amount, is a wonderful feat for a great cause and every little bit helps. But, I sometimes think having 10 people donate to 10 separate entities is less productive than having them all donate to a big, well established organization. The $100 donated to a small organization would be split to be used for cost of goods, maintenance of site, etc. Whereas $100 to a larger company that gets a lot more support.. your money might go predominantly to, say, a fellowship/scholarship.