Troy Townsin and Mallin Jiang, international training and development officer at Royal Roads University, are involved in a number of initiatives aimed at finding a cure for Blau Syndrome, a rare disease that affects Townsin’s daughter, Lexi. (Rick Stiebel/News Staff)

Royal Roads takes active role in search for cure to rare disease

Community builds support for Victoria girl battling Blau syndrome

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.

ALSO READ: New campaign launched for life-saving pediatric monitors at Victoria General

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.


Like us on Facebook and follow us on Twitter

Get local stories you won't find anywhere else right to your inbox.
Sign up here

 

Lexi Townsin, shown with her parents, Troy and Cheryl-Lynn, and her brother, Felix, has a rare disorder called Blau syndrome. Royal Roads University has taken an active role in gathering research and funding in the search for a cure. (Photo contributed)

Lexi Townsin, shown with her brother, Felix, (wearing a protective mask) has a rare condition called Blau syndrome. Royal Roads University has taken an active role in gathering research and funding in the search for a cure. (Photo contributed)

Just Posted

Food safety a good practice amid COVID-19 concerns

BC Centre for Disease Control offers useful food safe information for households

Sidney’s top emergency official says he is not aware of any COVID-19 cases in the community

The public Sunday also heard of future plans to help local businesses through tax deferments

Digitization of Peninsula News Review by Sidney Museum and Archives preserves historical legacy

Searchable database will ease research and preserve integrity of records

COVID-19: Victoria plumbing company dedicates van for grocery delivery

The Super Plumber uses van to pick up groceries for those in need during COVID-19 pandemic

COVID-19: A message from the publisher

We will be making some changes to our print editions during these unprecedented times

Evening world update: U.S. restrictions extended 30 days; NY deaths near 1,000

Comprehensive world update, with the latest developments in the COVID-19 crisis

‘It’s up to us: Recently-returned B.C. couple urges Canadians to take COVID-19 seriously

Garrett Kucher and Tory Apostoliuk make it home after almost a week of lockdown in Spain

‘Nothing concrete’: Tenants, landlords lack details after B.C. unveils COVID-19 rental aid

Single mom in Golden says she’s already going to the food bank after being laid off

Canada will make sure masks sent by China meet quality standards: Trudeau

Chinese Embassy tweeted that China was sending 30,000 medical masks along with gowns, gloves and goggles

B.C. issues guidelines about distancing, reusable bags to grocery stores amid COVID-19

Hand sanitizer and markers to keep lines two metres are apart are needed, province says

No plans to call in military right now to enforce COVID-19 quarantine: Trudeau

Trudeau unveils $7.5M for Kids Help Phone, $9M for vulnerable seniors amid COVID-19

QUIZ: How much do you know about the Olympics?

Put your knowledge to the test with these 12 questions

Most Read