What can I do to get involved?
Donate
Finding a cure or significant breakthroughs in treatment for MPS requires expensive biomedical research. In the world of rare diseases, funding for this kind of research is very limited. The onus is on patient families like ours to tap into their communities of support to raise money, advocate and drive research.
We are proud to be partnered with The Isaac Foundation, a Canadian charity dedicated to finding a cure for MPS and other rare diseases. Becs, Simon’s mom, is a member of the board of directors and oversees a dedicated Morquio (MPS 4A) fund. Through this partnership we are able to ensure that 100% of the money we raise goes directly to research and not into organizational overhead or administration costs. We are also grateful to have found a small but mighty supportive community of rare disease experts, researchers, advocates and fellow MPS parents.
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
Finding a cure for Simon will take a village. We need your ideas, your expertise and your fresh energy.
Maybe your office chooses a charitable cause every year to support or maybe your local pub hosts fun events to raise money for a cause – whatever it is, big or small, we’re always looking for opportunities to raise awareness and funds.
As we make plans for fundraising events and campaigns, we’ll be looking for silent auction donations, venues, promotion and more. Don’t be shy, please let us know if you’re able to help or to connect us with people and companies who would want to help.
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 (hello@curemps.ca).
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