Today is International MPS Awareness Day. It is not a celebration, but a day to honor the children who have so courageously lived with this disease. It is also our chance to have a unified voice to bring about the attention this group of diseases so desperately needs. There is no cure. And there is no treatment option for MPS III/Sanfilippo Syndrome. That has to change!!
Please wear purple or a purple ribbon. Tell people about Waverly & Oliver and direct them to the MPS Society's website. If you know of any medical professionals, therapists, teachers...tell them about this disease. So many children are diagnosed well after symptoms begin to manifest, because people are not familiar with MPS.
I would love to see a day when MPS can be diagnosed early and a treatment can begin immediately. I never want another parent to be told their child has MPS III, he/she is going to die much too young and there is nothing we can do about it.
Let's all work together to find a cure!!
Please send me photos of you and your family wearing purple/ribbons. I would like to post them on the blog to show the international support for all children with MPS.