Students Raise Money, Awareness, and Empathy for Rare Diseases

Students at North Carolina State aren’t letting the grass grow beneath their feet, knowing their feet can make a difference in a sick child’s life.

At a recent dance marathon called For the Kids, they raised more than $80,000 for Duke Children’s Hospital. And, to better understand that children with chronic illnesses don’t get to opt out of being sick, they all remained standing (or dancing) for 16 hours.

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Mike Holdner’s son, Josh, has tyrosinemia type 1.

If you aren’t aware, tyrosinemia is caused by the amino acid called tyrosine that isn’t cleared from the body and collects in various organs. Overtime, toxicity occurs and cancer can develop. In the past, children with tyrosinemia rarely made it into their teen years, but with better treatments available, and through ongoing research, more and more kids like Josh are living into adulthood. Josh has been treated at Duke and is now 17.

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Students also participated in other fundraising activities during the dance marathon. During a one-hour challenge, participants were challenged to raise $63, with each dollar representing one of the 63 beds in Dukes Children’s Hospital; and in a different challenge, students were asked to hold their cell phones in one hand. They were told that their phones were the size of a premature baby, and that funds raised would help buy the highly specialized equipment often needed to save those babies lives.


Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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