I'm sorry about your daughter. This is a tough problem. Even if pharmaceutical company profit weren't an issue, limited resources still would be a problem, so

I'm sorry about your daughter. This is a tough problem. Even if pharmaceutical company profit weren't an issue, limited resources still would be a problem, so very rare diseases would still suffer from lack of attention, I'm afraid, because if we replaced "what research produces the most profit" with "what research benefits the most people", that still wouldn't help KS sufferers much. Perhaps the kind of fundraising you are doing is the best that can be done. Or maybe some line of research that can benefit sufferers from multiple diseases (say, anything that results in a missing protein) could help a larger number and obtain government funding.