Since its inception, the MPS II Fund has been about hope. With a progressive disease, as you watch it progress, it can be incredibly hard to find and hold onto hope. Early on I met people, who became my mentors, who had found hope. Marie & Simon Ibell are one example (http://www.ibellieve.com). Simon lives with MPS II and Marie is his mom. Marie and Simon have been told six times that Simon had less than a year to live. Clearly, they believed differently. Clearly, they have hope.
Our shirts say: ‘Got Hope.’ So when thinking about a title for our Gala, hope was in my mind. However, when we began looking into the titles of other Gala fundraisers, it seems that other people have hope too. Which is awesome. But not original.
Alyssa, our sponsorship director came up with the title. Once Upon a Cure. There are many reasons this title works. One day we will look back at our lives and remember the time when there wasn’t a cure… once upon a cure. This disease also mainly affects kids because 80% of people with Hunter Syndrome have the severe type of disease and don’t live into adulthood (with the mild form, people like Simon Ibell, can live and work into adulthood… it is a spectrum disease, so disease severity & progression varies from person to person). So, having a fairy tale theme works because the disease affects mainly children.
Where did ‘Alice’ come from? Well, each year our theme will change and there was some conversation as to which theme we should have this year. However, Alice was a frontrunner from the start because Alice enters a new world, like newly diagnosed families. It is overwhelming and terrifying, yet there is a beauty to be found. No other families I know are forced to appreciate their lives more than ones who are affected by a progressive disease. I am Alice… learning new languages, meeting people I never would have met in my previous life, navigating an unknown world, on a journey to discover my ‘muchness’.
Alice in Wonderland images – courtesy of http://www.alice-in-wonderland.net/
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