October 2020 Update:
We are actively pursuing research partnership opportunities and have some exciting projects on the horizon. Join us as we are now expanding our fundraising efforts and creating a long-term dedicated Morquio Research Fund. Thank you for being part of our journey to find the breakthrough(s) that Simon and everyone living with Morquio deserves!
June 30 Update! It’s Becs’ 39th birthday and there’s no better gift than an anonymous donation of $3000 to push our kickoff fundraiser we’ll over its goal and we’re now close to $17,000! Thank you all for your incredible outpouring of support and can’t wait to get to work making the most of this momentum.
UPDATE! We have been blown away at the quick and generous outpouring of support for this research fund we're starting, thank you to all our amazing friends and family across the globe who have stepped up at this particularly challenging time to support Simon and everyone living with MPS IVA! To keep up with the momentum we are updating our modest $1,000 goal to $15,000 - let's see if we can reach it together and open the doors to even more possibility after the pandemic!
On Feb 28th, 2019 our lives were forever changed when our (then) 2 year old son was diagnosed with a very rare, progressive genetic disease called Morquio Syndrome, or MPS IVA. The disease, an uncommon form of dwarfism, mainly impacts skeletal growth and also causes progressive decline in the eyes, ears and respiratory system. Although we are incredibly thankful that we have access to weekly enzyme replacement therapy to slow the progression of the disease, we know, he and everyone living with MPS IVA, deserves a cure. Working with the Isaac Foundation we know that every penny raised will go towards promising and innovative research to help find a cure and ensure Simon, and everyone living with Morquio, has a long and healthy life!
Before the global covid-19 pandemic, we had big plans to help launch a long-term, targeted MPS IVA Research Fund to help find a cure but instead we've been preoccupied with keeping our family safe and juggling work and three kiddos!
SO, we're starting small - something is better than nothing! Help us celebrate Simon and Isabel's 4th Birthday by helping us raise $1000 to kickoff our long-term fundraising efforts. Thank you!!! (UPDATED: now aiming for a $15,000 goal!)