There are so many “Day’s.” Anti-bullying Awareness Day, World Thinking Day, Earth Day, World Cancer Day… google it and you’ll find days you didn’t even know existed! Rare Disease Day is one that matters to me, probably obviously, but you may not know why.
People don’t donate to causes they don’t know about. Why would they? Your grandma had Alzheimers, your mom has breast cancer, your uncle had a heart attack, your friend has diabetes. If someone is going to donate to a cause, it’s one they’ve seen hurt the people they love. The more people who have something that needs curing, the more people who know about it and the more people who will donate to it. Which is a good thing- except when it comes to rare diseases, and which is why we need YOUR help.
Aside from a few companies who manufacture rare disease drugs or doctors who recall MPS being vaguely mentioned during the one day in med school that covered lysosomal storage diseases, the vast majority people who know about MPS are the ones who’ve run into kiddos with it. YOU. And the only way we can raise awareness about rare diseases so that people who don’t know Trey can say: “Yes, I know a rare disease called MPS! My friends’, neighbours’ brother has it,” is by talking about them. A LOT. Tell people how MPS affects YOU. Is Trey your neighbour? Your student? A patient? A member of your community? A friend? What do you see when you see Trey and our family? Why does he need a cure? YOU need to talk about it and it needs to be personal. Especially if they’ve never met Trey, you need to give them a reason to care.
So this is why Rare Disease Day matters to me. It’s a day I can ask that you share something about MPS on Facebook, at work, with a friend, at a class you’re teaching… Show them pictures of Trey or Trey’s website. Talk about the impact MPS has had on your life.
Please. Do it today or do it any day between now and February 28. Or maybe every day. Mark it in your reminders. Talk about MPS. So we can raise awareness about this and other rare diseases. So we can find a freaking cure for this soul-crushing disease that takes our boys away from the families who love them- from the people who would die for them if it meant their child would live. Rare Disease Day Matters.
For more information on Rare Disease Day, go to: http://www.
PS. You may notice the poster was made by the Mesothelioma Cancer Alliance. Rare diseases unite!!
This picture is of Trey 4-months before diagnosis, at 19-month of age.