Well May 15th Tuesday is International MPS Awareness Day! Mucopolysaccharidoses is a rare genetic, storage disease. There are several forms of MPS, in my case it's known as hunter syndrome, it's rare effecting 1 in 150,000 males.
There currently is no cure and it is a terminal illness usually by age 13, however, Shire pharmaceuticals has created a drug (Thank You God!!) known as Elephrase, which has acted as a stabilizer, thus keeping patients healthy. The drug is given through an infusion type process.
The color purple represents MPS awareness, the ribbon in the photo is just 1 of 4000 that are being distributed throughout Dalton GA, as well as info sheets to help better understand MPS. So wear the color purple to show your awareness, or even a purple ribbon The high schools Northwest, Dalton, and Christian Heritage are all going to help with distributing the ribbons and info sheets. This was all thrown together a month ago and I just want to think my friends and family all who helped get all this done. It looks like its going to turn out better than I ever thought it would
So go out and raise Awareness for MPS!!!
No comments:
Post a Comment