Ryan Hull, a third-year McGill student, has been spending much of this summer raising awareness and money for research into rare diseases. These are also known as orphan diseases because the relatively small number of people affected means there tends to be less attention given to developing treatments.
Hull has been doing so by biking across Quebec, giving classical piano concerts.
Stops so far have included Quebec City, Rimouski and smaller centres like the Gulf of St. Lawrence community of Les Bergeronnes.
“Through this project, I get to support a cause I care about deeply, while performing music I love, while on a cycling adventure I’ve long dreamt of. I’m looking forward to raising more awareness about this cause with the people of Quebec,” the Biology student said.
Hull’s interest in rare diseases followed the diagnosis of one of his family members a few years ago.
Hull will wrap up his trip on Aug. 24, to allow himself about a week before the start of the new school term. Still, he’s hoping to play a few more concerts before getting back to the books – including one at McGill, if he can get a bit of help arranging it.
“Roughly 700,000 Quebecers are affected by a rare disease, facing unique challenges such as delayed diagnoses, lack of treatment options and lack of solidarity. Quebec is lucky to have health care and research networks dedicated to rare diseases (RQMO and RARE.Qc). Unfortunately, they remain underfunded and their resources are largely unknown to the public, including many individuals carrying rare diseases,” he said.
The importance of music
Though Hull is pursuing studies in Biology, music continues play a big role in his life.
“Through many years of lessons with Jacques Harvey, I’ve developed a large repertoire of classical music, with particular interest in the works of Bach and Chopin. Previous charity concerts supporting the Red Cross in Ukraine and a local palliative care home showed me that music is a great way to bring people together around a cause.”
He is also involved in musical initiatives at McGill, giving concerts with the McGill Classical Music Club and teaching piano in underserved communities, through the Montreal Heart of the City Piano Program.
Hoping to play a few more concerts
“The University is both a leading medical and musical institution. There’s even a student group based on interest in rare diseases, McGill RareDIG. So, performing somewhere at the University would be ideal fit for a final concert of this fundraiser.”
Though Hull will soon be spending more time in libraries, labs and classes than on his bicycle, he’s hoping donations for rare disease research keep rolling in until he takes down his Canada Helps page in mid-October.