National MPS Awareness Day

Last year the U.S.Senate passed a unanimous resolution, officially making February 25 (Saturday) National MPS Awareness Day.

As most people know, our son Max was born with MPS 1 - Hurler Syndrome and, like so many other children born with this disease, he passed away from complications from a stem cell transplant. He died far too young, and we have suffered far too much. Saturday is a day that many families like ours will be taking a moment to remember, recognize, and rejoice in each other. We ask only that you consider this email a reminder of this day, and that MPS disorders are just one of far too many diseases that are too rare for cures to be funded properly. "Awareness" means an increased understanding of the reality and presence of something otherwise unknown. We had not heard of MPS or Hurler Syndrome before our son was born, and we certainly had no idea that our beautiful boy - so pure and full of love - would be gone so soon.

Perhaps you will have a moment this year to make a contribution to a charity of your choice. Please consider the National MPS Society. It is a grassroots group of families who have created a community to engage with doctors, pharmaceutical companies, and each other to work continually towards future cures and current quality of life concerns.

If I may be allowed to quote from a press release from the MPS Society:
Mucopolysaccharidoses (MPS) and Mucolipidoses (ML) are genetic disorders that cause cells to perform improperly, resulting in progressive damage throughout the body, including the heart, bones, joints, respiratory system, and central nervous system. The diseases are rarely apparent at birth, but the signs and symptoms develop with age as more cells become damaged. As the damaged cells accumulate in the body, the body shuts down, eventually leading to a premature death. At this time there is no cure.

As the original sponsor of the resolution, U.S. Senator Lindsey Graham, R-South Carolina, said, "It is a parent's role to make sacrifices for their child; yet, for the parents of a child diagnosed with MPS, the sacrifices are exceptional. I have had the opportunity to meet with a number of parents of MPS children. These parents exhibit amazing hope, love, grace and humor that can often mask the many trials they undergo in caring for their children. My staff and I are constantly impressed at their ability to advance their cause while also selflessly caring for their children."

Additional information is available online here:
http://www.mpssociety.org

Thanks for your continued support,

Mike, Margaret & Grace