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As you may know, the original creator of MPS6cess.org and the MPS6cess Foundation, Brian Daugherty, passed on Dec. 31, 2007, from natural causes related to Mucopolysaccharidosis VI, Maroteaux-Lamy (MPS-VI) at the age of 34. Brian was diagnosed with MPS-VI, a rare genetic disorder, when he was 3 years old.

 

Despite his physical challenges and medical problems, Brian was involved in sports and many organizations including the Little People of America Association (LPA) and the MPS National Society. At his first LPA convention, Brian experienced what average-sized people take for granted every day: equality. Drawing on the strength from this community, Brian gained the courage to donate his time, effort and body to helping others with MPS. He was a patient participant in the Phase III Clinical Trial for a medication which enabled FDA approval in the United States, allowing others with MPS to receive treatment that slows down the progression of the disease.  Brian was knowledgeable about the disease he had and helped several other patients better understand it.

 

Out of Brian’s participation in the medication trial came an extreme desire to help children who otherwise could not get this treatment. He started the MPS6cess Foundation with the goal of raising enough money to help with medical and living expenses for a special family from the Dominican Republic, where treatment was not available.  Brian’s desire was to get this family self-sufficient and grow his foundation into one that would help fund research and assist other MPS families with needs.

 

Today, Patricia Espinal, also afflicted with MPS, and others continue working toward Brian’s goal.

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