I started the run in 2001 truly as a gut reaction, to right a wrong, to fight for so many children who did not have a voice or a treatment. To raise awareness for a disorder, whose parents, doctors, and researchers had been working for over 30 years searching a treatment, long before I had ever heard of the acronym MPS.
Many people have asked me why I continue with the run and family meeting year after year. My answer is simple….
I really started it because of a MPS3 father who spoke at the 2001 conference. His words were heartbreaking; he was begging and pleading to have the researchers give his child a treatment; a treatment like my children now enjoy. So for him and all our families who still are waiting for a treatment and praying for a cure, I continue the fight.
However, the run and family meeting have become bigger than even I could envision. For me, it has become less about raising money and awareness and more about planning a family reunion. A very special reunion, where as everyone is accepted and old families and new, can share that very special bond that is MPS/ML. No stares, no judgment, just love and HUGS! A place where we are all united, in a common bond to make a difference in our children’s lives. It is a hard road, but knowing we can walk it together makes me and all our families fight on!
I am in awe of all of all our families! However, a special thanks needs to go to the Frye, Gates, Faust, Scott, Brown, Whitecotton, Rivas, Bennett, and Lopez families, and all the families who have made a difference over the last 6 years. I do not make this run special!! It is all MPS and ML families, who have raised the awareness and funds to fund research; you are the hero’s who make our event special! Really, I just plan the party! It is all of our families that are making the difference!
You all have touched my heart in ways you will never know! My Wish is for a treatment for all our MPS/ML families and maybe someday a cure!
Tami Slawson, Race Director
National MPS Society's LA Run