You may hate that these days everything seems to turn pink for the whole month of October. Or you may appreciate efforts to associate the color pink with Breast Cancer Awareness month. But there’s one fact about awareness days and months no one can deny: they work.
That’s why having an International Mucopolysaccharidosis (MPS) Awareness Day is so important.
The more people recognize a medical condition (and I mean both more often AND increasing numbers of people), the better fundraising efforts go. Who doesn’t remember the Ice Bucket Challenge for ALS (Lou Gehrig’s disease) that put the ALS Association on everyone’s radar? The monies raised by that campaign boosted research efforts tremendously.
When my father, whose name was Bob, was waxing philosophic to us five kids, we called him “Friendly Phil the Philosopher.” (As in, “OK, Friendly Phil, we get it… what we wanted to happen isn’t gonna. No way. No how. We’ll suck it up.”) One of Friendly Phil’s most commonly used adages was, “Everything’s relative.”
In the world of rare diseases, there’s rare and then there’s really rare! MPS diseases, which are genetic lysosomal storage disorders, are much more rare than ALS.
So every opportunity to get people on board with raising funds for a cure is essential.
2016: An Idea Took Flight
On 15 May 2016, the MPS Society took a new approach to raising awareness that included “digital airplanes” people could create and whose progress around the world could be tracked. (The miles logged ended up being the equivalent of circling the globe 274 times! For more results, click here.)
Other MPS Day activities included:
- A webinar to help people advocate for MPS to their law- and policy-makers
- Social media photo frames and banners to generate buzz and get the word out about MPS
- “Courage Pages” where families could share their journeys.
Plans are underway for 2017’s MPS Awareness Day in May, so get your creative juices flowing!