MPS1 Families

Welcome,
 

The impact of MPS1 is felt by every member of the family. Because the disease manifests itself in a variety of different ways within each individual, entire families are left with a lifetime of complicated medical and personal decisions. The goal of the MPS1 Research Foundation is to help fund promising new research that will give the chance for a better life to people with MPS1. Successful new treatments will help entire families support their loved ones with MPS1.

Share Your Story...
 

As you can see from the stories presented by the families of Erik, Maddy, and Sydnee; there is no “typical” MPS 1 story. It would be so much easier if we all knew what to expect for our kids and when (and if) certain things will happen but we don't know. While there is no "Playbook" that tells us what to expect next, we know there will be many significant challenges and surgeries. Due to the many successes of transplants (BMT) and the enzyme repacement therapy (ERT), many of these children are living longer lives than was possible less than a decade ago and we are now in unchartered territory. All of these kids are different, but they are so special!

If a member of your family has MPS1, we encourage you to contact us. Families of people with MPS1 know all too well that bone marrow transplants and enzyme replacement therapies have given people with MPS1 an opportunity to live longer, but these are not cures. Much needs to be done to relieve the pain and suffering that this tragic disease causes. By telling your stories here, you can help us raise awareness and support for new treatments and hope for an eventual cure.