The Connecticut Hall dining facility is raising awareness for Rare Disease Day today led by Gabby DiSalvo, a student employee with myofibrillar myopathy.
There will be a baked potato bar hosted by DiSalvo, and students can wear purple to show support, according to University of Connecticut Dining Services.
DiSalvo, who originally pitched the idea to raise awareness for Rare Disease Day, is a senior at UConn with an individualized major. According to Dining Services, “her goal is to host her own cooking show to advocate for people with disabilities and rare diseases and to teach adaptive cooking techniques.”
Kian McEnerney, the student manager at CT Hall, said this was an opportunity to showcase how much DiSalvo contributes to the dining hall since she’s usually “behind the scenes.”
“People don’t really see her contributions — it’s definitely felt by the chefs and our cooking staff, but she’s kind of like an unsung hero around here,” McEnerney said.
DiSalvo, a wheelchair user, makes a cooking show with UConn Student Television called Cooking on Wheels, where she showcases accessibility-friendly cooking. She has also made multiple appearances on The Rachael Ray Show, according to a profile from UConn Today. The episodes, along with the most recent Cooking on Wheels video and more information, are on DiSalvo’s Linktree.
DiSalvo is one of only three people with myofibrillar myopathy at birth, according to Dining Services. Most people with the disease develop symptoms around age 30 to 40. McEnerney said that her diagnosis is “not stopping Gabby from accomplishing what she wants to.”
“There’s a lot of mystique out there for what’s truly going on, but Gabby doesn’t let that stop her,” McEnerney said.
DiSalvo described the myofibrillar myopathy as a “low-muscle tone condition that affects my whole body” in her UConn Today profile. Although she works on an adjusted schedule at CT Hall, McEnerney said she is always ready to get involved and go above and beyond.
“We assign her to do things, and she takes everything with grace, just looking to do more all the time,” he said.
Although Rare Disease Day takes place tomorrow, CT Hall is celebrating one day early to align with DiSalvo’s work schedule. Student workers are asked to wear purple, DiSalvo’s favorite color and a color often associated with disability advocacy, as well as jeans for “genes.”
McEnerney noted that every dining hall is encouraged to wear purple clothes and jeans on Friday to show support, not just CT Hall.
The Rare Disease Day website defines rare diseases as those that affect fewer than one in 2,000 people. The website says that 300 million people have rare diseases, and 72% of those diseases are genetic.
Rare Disease Day began in 2008. On leap years, it is celebrated on Feb. 29, “the rarest day of the year,” according to the website.
“Though Rare Disease Day is patient-led, everyone—including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policymakers, industry representatives, and the general public—can participate in raising awareness and taking action for this vulnerable population in urgent need of attention,” the website says.