Searching for a cure: Townsin honoured for rare disease advocacy

Learn more about the Alumni Changemaker Achievement Awards. 

“Lexi was the most charismatic person I’ve ever known — pure love and the brightest light, yet fiercely determined. She was captivating, everyone wanted to be part of whatever she was doing. My son calls her a magnetic force, and he’s right — you couldn’t help but be drawn to her.” 

Cheryl-Lynn Townsin started the Royal Roads Master of Arts in Global Leadership program with a purpose — and a painful reason behind that purpose.  

Townsin’s young daughter, Lexi, lived with Blau Syndrome, a rare inflammatory disorder “that primarily affects the skin, joints and eyes.” She passed away from the disease in 2019, at the age of six. 

Townsin and her husband, Troy Townsin, started a foundation to advocate and fundraise for research  for the rare disease, which has no known cure.  

Finding herself at the helm of a non-profit with no experience, Townsin says RRU’s master’s program “felt like the perfect opportunity to develop the skills to effectively lead the grassroots organization we built in an urgent search for a cure.”  

The Cure Blau Syndrome Foundation has grown since then and Townsin’s efforts on behalf of other families dealing with Blau and other rare diseases have expanded, drawing attention and researchers. For her leadership and advocacy, she will be presented with an Alumni Changemaker Achievement Award by Royal Roads University.  

RRU established the awards in 2024 to celebrate the exceptional achievements and contributions of graduates who have made significant impacts on the complex challenges facing workplaces, communities and the world while embodying the university's values of caring, courage and creativity. The winners will be honoured in a ceremony on campus during Alumni Weekend.  

Townsin, who grew up on Vancouver Island and works as RRU’s student engagement co-ordinator, will be presented the Emerging Changemaker award, which recognizes an alum early in their career who is motivating change within their circles of influence. 

Wendy Rowe, a professor in the university’s School of Leadership Studies, wrote a letter of support for Townsin’s nomination, calling her “a passionate leader” who “has contributed significantly to changes in how the medical field engages with families of children with Blau Syndrome.” Rowe also noted: “…. Bringing these people together has advanced the field.”  

To help share these advancements Townsin made a documentary film for her master’s capstone project. Rare Humans: Turning Hope into Action chronicles the stories of Lexi and children in seven other families as they coped with a variety of rare diseases. 

During her studies Townsin also created a roadmap for patient organizations to work with researchers that continues to be presented at medical conferences. Her fifteen-year-old son, Felix — who started his own global initiative called “A Million Acts of Love” in memory of his sister — recently presented Townsin’s framework virtually to a conference being held in France. In attendance was a genetic scientist, who later reached out to the Townsins to say she has funding and wants to pursue a genetic therapy for Blau Syndrome.  

“… that was our dream for Lexi. From the day Lexi’s genetic testing revealed the cause of her illness, we were determined to find a genetic therapy to fix it, says Townsin  

Her time in the Master of Arts in Global Leadership program also gave her a perspective on different causes.  

“I entered the program deeply focused on the medical side — rare diseases were my passion,” she says. “But everyone sitting beside me had different causes they were passionate about, just as important. It became very clear to me that we can't do everything on our own. We can't take on every cause, but we can recognize each other’s efforts and move forward together. That’s the power of collective action.” 

The Alumni Changemaker Achievement Awards showcase the diverse talents and accomplishments of RRU's alumni network as they advance the university’s vision to inspire people with the courage to transform the world. The awards reception will be held during the annual Alumni Weekend.