Apr. 27, 2015
Posted by Jennifer Huron
At just 13 years old, Emily Argersinger decided to climb the highest peak in the northeast, Mount Washington. She did this to raise awareness of Sturge-Weber Syndrome – for herself, and for every other patient with this rare disease.
Mt. Washington is famous for its dangerously erratic weather. Emily had never been on a major hike. However, once she came up with the idea, she never looked back.
Emily was born with a port-wine stain birthmark. Because of its location, her parents sought an MRI, which confirmed she had Sturge-Weber Syndrome. This is a rare disorder characterized by a facial birthmark with possible neurological and vision abnormalities. Severity can vary dramatically from one person to another.
Emily has had minimal medical complications. She considers herself fortunate, and with generosity and a big heart she pushes herself to help others who have more severe symptoms.
During her first climb up the 6,288-foot high mountain in 2011, she raised more than $3,500 for the Sturge-Weber Foundation and carried a banner to raise awareness.
“It was one of the best experiences of my life and even though it was hard, every step I took was for a good cause,” she says.
For her next climb, she wants to make an even larger impact and raise one dollar for each foot she climbs.
Emily is an example of having the courage to try something new, and for looking beyond her own experience to make a positive impact on others.
NORD is honored to tell Emily’s story as part of the 2015 Portraits of Courage celebration.