Before our daughter was diagnosed with MPS 1 we had no idea that Hurlers even existed. We soon realized that rare diseases, like Hurlers, often go underrepresented largely due to a lack of awareness. While going through treatment with Kennedy we received unbelievable support from our family, friends, and local community. Their generous and compassionate response to our struggle made our nightmare a little more bearable.
We are grateful for all the support we have received, and we are grateful to have our kids home with us. We know that we have been blessed and we have made it a part of our mission to raise awareness in order to make a difference for others. To that end, we are actively speaking to share our story, educate people about MPS and Orphan Diseases, ways that they can help, and to raise funding for a cure.
We are open to speak at Churches, Events, Businesses, Medical groups, or any other association. We are asking you to be our advocate. If you are connected with any such groups, or have any recommendations, connections, or introductions that you believe would be valuable, we would love to hear from you.