Meet Nicki Perkins, a cystic fibrosis survivor who champions research impact

Nicki Perkins is a fierce advocate and leader who has dedicated her life to improving the lives of those living with cystic fibrosis.

Her commitment is personal — she was born with cystic fibrosis (CF). 

CF is a genetic disorder that causes build-up in the lungs and digestive system, leading to breathing and digestive problems, often in children. As the director of the Summit Foundation for Cystic Fibrosis, Perkins has been at the forefront of raising funds for and awareness of CF and other chronic conditions. 

Her passion has had a sweeping impact on the work being done by the Snyder Institute for Chronic Diseases within the Cumming School of Medicine (CSM) at UCalgary. In particular, Perkins, BA’95, BA’08, is credited for championing the Snyder Institute’s core resources — the network of labs and facilities that support basic and clinical research, enhancing scientific excellence. 

“Without Nicki, the core facilities that enable the innovation engine within Snyder would have faltered,” says Dr. Michael Parkins, MD, professor in the CSM and infectious disease specialist. “Nicki’s selfless fundraising has contributed to the advancements of the Snyder Institute and its members in a myriad of ways.” 

During UCalgary Giving Day, donations to the Snyder Institute support educational initiatives that enable trainees to hone their skills and competencies, propelling research breakthroughs that advance knowledge and ultimately change lives.

Can you tell us a bit about yourself and your involvement in cystic fibrosis advocacy and philanthropy? 

I was born with cystic fibrosis and wanted to create a foundation that focused the research dollars on CF directly and in Calgary. I have been the director of the Summit Foundation for Cystic Fibrosis since its inception in 2005. I created a team of volunteer board members to govern the foundation’s main purpose, “to increase the length of lives of those afflicted by cystic fibrosis.” In our almost 20-year history, we have raised more than $2.7 million for programs within the institute and other programs directly benefiting CF patients in southern Alberta.

When did you decide to get involved in cystic fibrosis research at the Snyder Institute? 

I got involved with Snyder at the inception of the institute. In the early 2000s, the medical community at the University of Calgary gathered to form research institutes to collaborate better and share research findings and resources. This proved to be a very beneficial system for health-care advancements. In the beginning, it was called the III or Institute of Infection, Immunity, and Inflammation. It was a mouthful, and it didn’t land easily in the eyes of donors. Snyder rebranded to its current name to encompass the enormous number of diseases that were being studied. I was selected as a patient ambassador for a huge philanthropy campaign called “Reach!” The money from that program was used to build several new buildings at the University of Calgary campus. This created space for more research and better collaboration between disciplines.

How do donations play a role in supporting young researchers and facilitating research that leads to medical innovations?

Knowledge is power and investing in these bright minds will open so many doors to find solutions to old-world problems. You never know which student will crack the code to infection control or develop an antibiotic that is not resistant to pathogens. My advice to anyone looking to get involved is to be a voice, an advocate and an ambassador sharing what you’ve learned about the institute. There are accomplished researchers and doctors trying to find ways to prevent diseases, create new treatments for diseases, and in the end, cure diseases. This is the place to support if you want all that.

How has your experience with chronic disease management influenced your overall health?

Having been born with CF, infection has been my mortal enemy. Snyder began doing research that allowed the clinician to take patient samples of bacteria or blood, for example, and hand them off to the researchers located in the same building. It was called Bench to Bedside. This allowed for precision medicine to develop. It alleviated the trial-and-error portion of finding a suitable treatment, saving the patient from unwanted side-effects or setbacks. 

What resources or support from the institute have you found most beneficial? 

I have enjoyed a close relationship with the past and present directors of the institute. I have shared my story with them, and in that, have found I became a patient ambassador, someone to share the story of the institute’s triumphs and breakthroughs. I was selected as a patient advocate during the $360-million Reach! campaign. Having the support of the institute’s top brass allowed me to amplify it on my platform. Because of my exposure, I was able to secure funds to purchase MIBI-TOF and CyTOF, to name a few.

(MIBI-TOF creates images of metal-tagged antibodies at subcellular resolution in clinical tissue sections. It enables detailed, spatially resolved analysis of tissue samples, helping researchers investigate complex cellular structures and microenvironments. CyTOF is a high-performance mass cytometer that enables the analysis of more than 40 markers. It allows for multiplexed profiling of cellular populations, revealing insights into cell types, cell states and intercellular relationships within complex biological systems. The markers are antibodies labeled with metal isotopes, helping researchers identify and quantify specific cellular features without the overlap of conventional fluorescence techniques.)

How has donating impacted your feelings about your own health journey? 

Finding the dollars needed for the work being done at the institute is quite different than just donating a $25 cheque. I get to learn what is needed to increase the capabilities of Snyder’s programs so that breakthroughs in medicine and disease management are realized locally. Snyder has an incredible team of clinicians and researchers, belonging to a fantastic medical school. It is much more meaningful to see the real-world impact of what a machine or a type of equipment could mean to the population.

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Dr. Parkins says, “Despite having only 25-per-cent lung function, Nicki Perkins is a force to reckon with. For the last 15 years, this CF survivor has championed the research of the institute. As the head, heart and soul of the Summit Foundation for Cystic Fibrosis, Nicki brought together leaders in the community and industry to create an environment of radical philanthropy to support the institute.” 

During UCalgary Giving Day, the Calvin, Phoebe and Joan Snyder Institute for Chronic Diseases thanks Nicki for her invaluable contributions. To learn more about how you can support the Snyder Institute, visit this page.