Net proceeds means that we cover our operating costs (hiring staff, producing the events, etc.) and the remainder, roughly 70%, goes to CTF earmarked for research.
“SO WHAT EXACTLY IS NF RESEARCH?”
First we have to understand how the research world works – it’s nothing like what most people think. We’re going to focus on the two main players – academia (scientists) and industry (pharmaceutical companies).
Whereas scientists want the opportunity to be published and make meaningful scientific breakthroughs, pharmaceutical companies are generally motivated to create and own patents that can fulfill market needs (aka owning drugs and making money).
BY CREATING RESEARCH OPPORTUNITIES FOR A DISEASE, BOTH SCIENTISTS AND DRUG COMPANIES ARE BETTER INCENTIVIZED TO RESEARCH IT.
Scientists need to believe that a particular path (i.e. neurofibromatosis research) has fruitful opportunities in it.
Pharma companies need to know that there is a substantial enough market for a drug to be profitable.
CTF ACTS AS AN INTERMEDIARY AND CATALYST FOR SCIENTISTS AND PHARMA COMPANIES.
In real-world terms, CTF funds grants, contracts and scholarships for scientists to pursue NF-related projects, and also collects market data to show pharma companies that NF is a disease worth curing. (Sounds crazy, but it’s their business.)
Some of the biggest research wins are when a drug is developed to cure a rare disease, but actually treats something wide-spread as well. With NF, there is a great deal of research on tumors and genetics that can be applied to a variety of other fields (cancer being the big one).
Whichever party (scientists or pharma) takes on a project, it’s not cheap by any means. Scientists and other support staff all need salaries, facilities, equipment, maintenance, and a slew of other things that are part of the process of having an idea, researching it, and then developing a chemical mechanism that can do what they want it to.
Once a drug is ready for testing, that’s really the tip of the iceberg. The path towards FDA approval is lengthy to say the least. After bench testing proves a new treatment to be safe, the next major hurdle is proving effectiveness through clinical trials which requires not only approval but willing participants. CTF does an excellent job at transparently listing the progress of their projects.
If a drug successfully exits clinical trials, it has the FDA approval process, a drug patenting process, legal processes, and more, all of which have to happen before it can reach the market.
JUST IN CASE YOU MISSED IT BEFORE, THIS IS WHY RESEARCH COSTS SO MUCH.
One of CTF’s largest victories to date, is the entry of AZD6244 into clinical trials. CTF funded and advised research for this potential new NF drug, encouraging an unprecedented collaboration of data. This atypical approach is leading towards a (**fingers crossed**) record FDA approval.
If you want to learn more about AZD6244, here’s a post we wrote about it.
Hopefully that gives you a clearer picture of where Cupid’s money goes, and what research actually means.
If you still have questions, please email us at [email protected]