Zebra Run 2022

In 2016, when she was just two-and-one-half years old, Willow Cannan was diagnosed with a rare genetic disorder called multiple sulfatase deficiency (MSD). The diagnosis was made by local pediatric neurologist, Dr. Marcus Lee, after he ran genetic tests when Willow saw him for developmental regression.  Her parents were devastated to learn that MSD is a progressive disease leading to loss of milestones such as walking and talking and death in childhood, usually by age 10. Willow is one of about 100 children worldwide living with this disorder. 

Willow's mom, Amber Olsen, began to learn what she could about the illness and soon traveled to Europe to meet with world experts from Germany, Italy, the United Kingdom and the United States to learn more about the disease. Because the disorder is so rare, funding sources—from either pharmaceutical companies or governments—were scarce or nonexistent. 

So what did Willow's mom do? She began a foundation to raise money to find a cure. United MSD Foundation, headquartered in Ocean Springs, Mississippi, is the main funding source for gene therapy research that will one day cure MSD. Yes, the major source of funding for gene therapy research is right here on our beloved Mississippi Gulf Coast. 

One of the major fundraisers for the United MSD Foundation is the annual Zebra Run, to be held March 5, 2022 on Front Beach in Ocean Springs. This year’s goal is $80,000 as part of a larger goal of $5 million to adequately fund gene therapy research and treatment development. With adequate funding a cure for MSD is within reach.

Will you consider becoming a sponsor for the Zebra Run?

Click the button below for more information about sponsorship and all the perks that go with it.