The Kennedy Ladd foundation is dedicated to supporting others on their MPS journey, raising awareness, and finding a cure.
MPS 1 is one of many Orphan Diseases. That term is used when the disease affects less than 200,000 people. Due to the lower number of people impacted, few researchers or companies will even considered working toward a cure or treatment. That's why we need your help. Spreading the word and helping us make the right connections is one of the best ways to make an impact.
Find a Cure
The oldest living Hurler patient is only 31. Without a bone marrow transplant most patients die before they reach 10. Even after a transplant, Hurler patients lives are full of complications and additional surgeries, and most will die in their 20s. MPS 1 needs a cure. There are new therapies being explored currently that offer real hope for Hurler patients, but these researchers need support and funding.
During the 111 days we spent in the hospital with Kennedy our iPad was a blessing. It was a source of education, entertainment, and much needed escape for Kennedy. With the high costs of medical expenses, we know that not all families are also able to afford an iPad. By providing iPads to other MPS patients we are able to bring them some much needed relief in the moments between all the madness.
Because an MPS patient is often has a suppressed immune system they cannot be around a lot of people and especially other sick people. For us, that meant when Lincoln was undergoing treatment his own sister could not be near him. Finding adequate housing while your child is immunosuppressed can be very difficult and expensive. One of our big goals is to provide housing to immunosuppressed patients so they will have a clean, comfortable, and safe place to live.