What can I do to get involved?
How does a rare disease research fund like this work?
Step 1 – Raise money
Step 2 – Stay on top of the latest research, attend conferences and pay attention to the science and gradually build a network of contacts and advisors.
Step 3 – Either stumble upon a relevant research project that needs additional funding OR we issue a Request for Proposals and work with science advisors to select promising research projects.
Step 4 – Repeat steps 1 – 3 until a cure or breakthrough is found
*learn more about our inspiration and how this process worked for Andrew and Ellen McFayden, MPS parents behind the Isaac Foundation.
*see how another Morquio family is taking a similar approach in the US, our friends at Rooting for Robert are doing amazing things!
Spread the word and help fundraise
Our mission is not just about fundraising, we also want to raise awareness about MPS and what it’s like for Simon and other kids like him. Whether it’s an article in the paper or spreading the word at our local schools, we know that knowledge is power and that the more people understand, the more doors will open for Simon to live his best life. Have an idea or opportunity? Let us know (firstname.lastname@example.org).
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