Rick Stiebel/News staff
Imagine what students gathering information from around the world could accomplish in the search for a cure to a rare disease.
Blau syndrome is a progressive inflammatory disorder that commonly affects the skin, joints and eyes, explained Troy Townsin, the father of a child living with the painful condition. Small, hard lumps that form on the skin and organs are some of the symptoms typical of Blau syndrome.
Although his daughter Lexi was originally diagnosed with juvenile arthritis when she was barely a year old, it wasn’t until around her third birthday that her parents found out it was actually Blau syndrome, Townsin recalled. Since that time, he’s set up a foundation to find a cure and attended several international conferences on rare diseases to learn as much as he can about the disorder. “A big part of the problem is there are only 200 known patients in the world, and very few specialists even know about it globally,” he noted.
Townsin is organizing a symposium in Victoria in the spring or late summer of 2020 to address the lack of data. “I have buy-in from doctors in Japan, the U.K., Belgium and the U.S. all committed to attending. Sharing research for the first time, bouncing ideas off each other and coming up with better strategies will lead to a cure.”
Townsin is keen to hold the symposium at Royal Roads University, where his wife, Cheryl-Lynn, works in student services while completing her masters in Global Leadership. “Royal Roads has been absolutely amazing in supporting Lexi,” Townsin said.
Anyone who has ever spent time with Lexi can understand why everyone is so eager to help, said Mallin Jiang, international training and development officer for professional and continuing studies at RRU. “A group of students from different universities across China met Lexi and she melted their hearts,” Jiang said. The students were here for a one-semester term taking leadership and intercultural communications, with the main focus on business. “They organized a fundraiser in May that raised more than $800 for the Cure Blau Syndrome Foundation in less than two hours, but they wanted to do more than just one event,” Jiang added.
“They committed to spreading the word about Blau syndrome when they returned to China through social media, which is key. They want to make a positive impact in their country and beyond. Students do a lot of self-leadership here that they take back home to inspire leadership. We have put a real focus on inspiring other students to start similar initiatives. It’s inspired me personally. We have many programs that involve volunteering and we could forge a connection through Lexi locally and globally.”
A dozen groups of international students from Japan, Mexico, Colombia, Korea, China and other countries will take RRU’s Summer English Experience program, which focuses on leadership and connecting with RRU’s teachers. “We’re building a fundraising element to some of the courses,” Jiang said. “Students from Mexico who visited last week are designing their own fundraising activity. My vision is to weave this into as many programs as possible by fundraising and gathering information through social media. It’s a great opportunity to increase Royal Roads’ involvement in the community by engaging students locally and internationally. They can be real ambassadors of change globally.”
The more patients around the world that are identified with Blau syndrome greatly increases the potential for obtaining biopsies, natural history and information on disease progression, which is crucial to furthering research, Townsin explained. “Having Royal Roads involved locally and having the benefit of that global connection in compiling data is phenomenal,” he stressed. “I can’t say enough about how grateful we are and what a difference that makes.”
Townsin also wants to explore working with local businesses on the West Shore to get them involved in fundraising initiatives as well.
Although Lexi has to deal with constant pain, you wouldn’t know it if you spent any time with her, said Townsin, the author of several children’s books. “She’s the funniest character you’ll meet and loves to sing. Some of the videos we’ve made for our website give you a sense of what she’s really like.” Check them out at Facebook Me My Dad and Blau.
Lexi is excited about starting Grade 1 in September at Ecole John Stubbs, where she went to kindergarten. “They have an awesome team of teachers there,” said Townsin, a former Colwood resident who now lives in Esquimalt. “She’s had to miss a lot of school, but they really go the extra mile to make her feel included.”
For more on Lexi and Blau syndrome, visit curebs.com.