I am participating in Walk for Children’s 2024 presented by UPMC and UPMC Health Plan to support Addison in her fight against Hurler Syndrome.
Addison was diagnosed with Mucopolysarcharidosis Type I (MPS I), or Hurler Syndrome at 14 months old. Hurler syndrome is a rare, genetic, lysosomal storage disorder with no cure. It’s caused by a mutation of the IDUA gene. Children with Hurler Syndrome are missing an important enzyme that breaks down sugar molecules in the body. Without this enzyme, the sugar molecules build up causing damage to bones and organs.
Addison received a bone marrow transplant on January 11, 2023 and has been receiving her care at UPMC Children’s Hospital. She has overcome so much in her lifetime and unfortunately will have to continue to do so until we find better treatment options and a cure for those living with this disease. Our goal is to continue raising awareness to improve treatment options and find a cure. All fundraising from this event will go to UPMC Children’s Hospital to continue providing exceptional pediatric care, treatments, and research for children & their families.
Join us to to support Team Addison, our champion, and all other patient champions and their families on Saturday, June 8th.