How Your Dollars Will Make a Difference
We need funding and need more funds now. There are thousands of rare diseases, but for a variety of reasons Morquio has traditionally not received the financial support many others do. We are putting Morquio funding for Robert and the Morquio community on the map, and it often takes communities like ours to do so with such rare diseases.
Where Does the Money Go?
Dollars raised have gone, and will continue to be utilized, to fund ongoing research and to jumpstart new research for the world’s leading Morquio and genetic disease scientists. To date:
- We raised over $1,000,000 in a little over a year, starting with our first fundraiser in September 2021 through our second fundraiser in September 2022.
- We have distributed $580,000 and pledged a total of $984,000 to 5 research groups for multi-year projects, some of which are collaborating on projects with other researchers all over the world.
- These funds are, in total, supporting 11 different research projects.
- Each study has a specific goal: to further research for a particular idea that could be the next (and better) treatment for Morquio. These researchers are investigating everything from repurposing
drugs to cutting-edge gene therapies.
- All dollars are subject to negotiated grant agreements that require periodic updates and protect our Non-Profit in the event of adverse events (such as deviations from proposed budgets, breaches by the recipients, or key principals leaving).
- Our Board of Directors, which we believe is a first-rate board with successful doctors and
businesspeople, has to approve all fundings.
Most of these studies would not happen without our support, and for those that have other funding sources our funding is of paramount importance to keeping them going.