National Gaucher Foundation, Ottawa, ON

Hello, my name is Christine White. My husband and I are the proud parents of three adult children, Andrew 30, Meghan 25 and Kate 24. Our daughters Meghan and Kate have type 1 Gaucher disease. Diagnosed in 1991, we had never heard of Gaucher Disease. The internet was not the powerful tool it is today and for the first few months, with very little information available, we felt terrified and isolated. Later that year we were invited to a meeting at the home of Mark Freedman, a fellow Gaucher patient and for the first time we met others with this disease. Mark told the group about a new treatment, Ceredase, he had learned of in the US and invited us to join in his battle to make this drug available to Canadians. After many months, our campaign advanced, ending with Mark, in the throes of a bone crisis, conducting a meeting with the Minister of Health from his bed at Mount Sinai Hospital. Following that meeting Ceredase was approved for use in Canada. Even with this victory there was still much work to be done and shortly after the drug was made available The National Gaucher Foundation of Canada was formed. My girls are now both grown, and take their biweekly treatments from home. We know this would never have been possible without the inspirational leadership of Mark Freedman and the dedicated work of that first group of patients and families who came together to form the NGF.