Sussex Tech health students put focus on rare disease, raising funds for research

Two Sussex Technical High School students planning careers in medicine are setting their sights on combating the rare disease known as moyamoya, which can trigger strokes, seizures, and other medical problems, and primarily affects children.

Students Molly Dopler and Abby Fowler, both sophomores from Seaford, are participating in Rare Disease Day at Nemours Alfred I. duPont Hospital for Children later this month. They have conducted research into the disease, interviewed multiple physicians and the parent of a child living with moyamoya, and are now raising money to aid the research effort.

“It’s a saddening disease, and we want to help contribute to the fight,” said Dopler.

On Feb. 29, they will be going to Nemours’ Wilmington campus and giving a presentation about moyamoya to researchers and administrators, showcasing an informational display and answering questions. They are raising funds online and through social media, with all money going to Nemours to aid research efforts; donations can be made online at https://secure.qgiv.com/event/team/851381/.

The students interviewed a neurologist and a neurosurgeon who have treated moyamoya cases. “It made us kind of hopeful, but it also made us want to help more,” Dopler said. “They don’t really know much about the cause,” Fowler explained.

They discovered that the prevalence of moyamoya is much higher in Japan than in the United States. The name of the disease means “puff of smoke” in Japanese, referring to the appearance of the blocked arteries in the brain that cause the strokes. Treatments for moyamoya are similarly sparse; some medications can help, and surgery can be an option to restore blood flow.

Especially powerful was their interview with the parent of an 11-year-old girl with moyamoya. “We heard about the struggles they went through, and it was very inspiring,” Fowler said. “Their whole day is just centered around their daughter.”

The Rare Disease Day event is a partnership between Nemours and HOSA – Future Health Professionals, of which Dopler and Fowler are both members. They are studying health professions at Sussex Tech, a program which prepares students for careers in health care and offers the opportunity to become certified nurse assistants upon graduation.

The project has already motivated the students in their future choices. “It made me look into research more as a possible field,” Fowler said. “I want to find out more because there’s not a lot known yet.” Dopler is examining a potential career working in neurology.

For more information on moyamoya, visit the National Institute of Neurological Disorders and Stroke at the National Institutes of Health at https://www.ninds.nih.gov/Disorders/All-Disorders/Moyamoya-Disease-Information-Page.