Performance of Piazzolla Turns to Discussion of Rare Autoimmune Disease


Mike Plotz

Double-degree senior Clara Engen on violin, Conservatory senior Emily Tisdel on viola, double- degree fifth-year Chava Appiah on cello, and double-degree senior John Etsell on piano open the program for the Violin 4 Vasculitis Initiative hosted by Allison Boyt, OC ’09. The event mixed classical music and an informal lecture to raise awareness for vasculitis.

Rory O'Donaghue

Allison Boyt, OC ’09, doesn’t let much get in the way of her music. After a rare autoimmune disease struck the violinist at an early age, she founded a nonprofit awareness project that she calls the Violin 4 Vasculitis initiative. Boyt held an informational session in Stull Recital Hall Tuesday.

She started off the evening by asking the audience to make more noise — “It’s so quiet, it’s creepy!” — lending a casual air to the evening’s proceedings. She and her collaborator, guitarist Kurt Reed, then launched into a flowing rendition of “Libertango” by Astor Piazzolla to begin the program. After a gracious acknowledgement of the applause, Boyt put down her violin to discuss a more serious subject: her experience living and performing with vasculitis.

In the fall of 2004, when Boyt was 16, she began experiencing severe fatigue and complex respiratory problems. She began struggling with even the simplest everyday tasks, and her family sought numerous medical opinions. The diagnoses varied — her doctors couldn’t figure out what was wrong. “At first they told me I showed signs of bronchitis,” Boyt said, “and then it was pneumonia.” In the few months that followed, Boyt drifted in and out of clinics while her symptoms progressed in severity. Then she started to cough up blood. “That’s when we knew it was very, very serious,” Boyt explained. Not long after this development, she collapsed while climbing the stairs to go to bed one night. She was rushed to the hospital, and entered a two and a half-week-long medically induced coma. “They had to shut my body down to try to figure out what was wrong,” Boyt said. Finally, four months later, in the spring of 2005, a firm diagnosis came through: Boyt was suffering from granulomatosis with polyangiitis (commonly called Wegener’s granulomatosis), a rare and dangerous chronic vascular autoimmune disease.

To gain control over her symptoms, Boyt began a variety of treatments, including steroids and chemotherapy. As a 17-year-old high school senior, she wanted to focus on college applications and auditions, determined to attain her dream of becoming a professional violinist. However, her disease quickly overshadowed her life. “Having a chronic disease makes you grow up fast,” she remarked seriously. “You’re suddenly dealing with adult stuff.” At that time there were only a handful of clinics in the country that specialized in the treatment of vasculitis. Fortunately for Boyt, this list included the Cleveland Clinic. “I was lucky to grow up in Ohio,” Boyt said, explaining that close proximity to medical care necessarily influenced her college decisions. These factors immediately pointed her towards Oberlin. “I came to Oberlin because I was sick,” she said. “I could get an education and medical attention in Cleveland at the same time.”

Boyt attributes much of the spirit behind her project to the formative experiences she had as a student at Oberlin. During her presentation, she cited two of her former violin professors as her initial inspiration for Violin 4 Vasculitis. “[Professor of Violin] Gregory Fulkerson told me, ‘You have something that not many people have to deal with. I want you to do something with that.’” Peter Slowik, professor of Viola, had similar advice: “You have this gift. Do something with it.” With these voices in mind, Boyt began to toy with the idea of combining the two defining aspects of her life — her music and her illness — in a way that could have an impact. She graduated in 2009 and founded Violin 4 Vasculitis in 2011. “I started this project without any guidelines,” she announced proudly. On her website, Boyt wrote, “I realized it was not enough to simply survive with vasculitis. I wanted to bring information and hope to others who also struggled, and let them discover that they were not alone.”

The violinist continued to alternate between performing crowd-pleasing pieces and discussing the details of vasculitis. She was accompanied in her next selection, Kreisler’s “Tambourin Chinois,” by Oberlin’s own James Howsmon, professor of Collaborative Piano. Boyt made it clear that she values interaction with local artists, and invited a piano quartet composed of Oberlin students — double-degree senior Clara Engen on violin, Conservatory senior Emily Tisdel on viola, double-degree fifth-year Chava Appiah on cello and double-degree senior John Etsell on piano — to take the stage to perform the first movement of the Brahms Piano Quartet in C minor, Op. 60. “I figured you could listen to the dry, washed up ’09 grad, or you can hear your classmates!” Boyt said. The music was thoroughly satisfying, lush and intimate, and Boyt explained how her diverse musical programs reinforce her efforts with vasculitis awareness. “People won’t come to hear ‘Boohoo, I got sick,’ but they will come to hear music,” she said. Engen, a Violin Performance and History major, praised Boyt’s work and ambitions: “She’s a great example of a Conservatory grad who is actually doing something with her degree.”

Boyt has now performed 19 “informances” — a term she uses to represent the hybrid nature of her performance presentations that also references her customary informality — in 15 states, though she hopes to eventually reach all 50. Through the expansion of her program, Boyt was able to add fundraising for the Vasculitis Foundation as an integral component of her work, and aspires to raise and donate $25,000 by the time she concludes her tour of all 50 states. She says the project has taken her to “many cool places and many cool people” so far, and that she can’t wait for her future lineup. Aside from her musical prowess and laid-back, casual air, Boyt’s is dedicated to her initiative’s central goal of broadening nationwide understanding of vascular autoimmune diseases. “I once drove all the way [ from Akron] to Madison, WI, and played for 10 people,” she said, “but those were 10 people who hadn’t known about vasculitis before, and that’s the only thing that matters.”

As she reflects on her work, Boyt seems satisfied with her efforts. “I am musically fulfilled through this project more than I ever could be as a healthy performer,” she writes online. She’s proud of the network of vasculitis patients and music lovers that she has helped to connect and values the frank and personal atmosphere that her “informances” create. Her advice to rising musicians? “This is what I’m doing,” she said. “This is my unique path. I want you to find yours, and don’t be shy about it.”