Powered by Perspective: Our Unique Lens into Rare Disease
Lumiio CEO, Blaine Penny shares his personal experience that fuels his desire to make the future brighter for patients and people affected by rare disease
Patients and their communities are at the centre of Lumiio’s vision and mission. Behind this patient-centric disease community approach are the people on our team who have a unique lens into the challenges of living and caring for someone with a rare disease. This powerful perspective is the force that drives our purpose to make meaningful impacts on the lives of patients and the healthcare systems that serve them.
Several of our team members are rare disease patients themselves and/or caregivers of a loved one who is impacted. These lived experiences give our team insights into the challenges of living with a rare disease and our CEO, Blaine Penny is no exception.
Blaine transitioned to Lumiio’s full-time CEO in September 2021 and has over 20 years of experience in the health, technology, and engineering sectors. He began his career as a Professional Engineer with a focus on leadership and management roles. With a self-declared passion for building and leading teams, Blaine no doubt has the expertise to lead the strategic vision and operations of our company.
Blaine’s most meaningful experience, however, stems from his involvement in rare disease advocacy and research which began after life-altering events in 2008. At the age of 4, Blaine’s son (Evan) suffered the tragic onset of mitochondrial disease, a group of disorders caused by dysfunctional mitochondria. As it turns out, Evan had an underlying genetic disorder that was detected after a year of extensive testing and he was diagnosed with a ‘probable’ mitochondrial disease. Evan subsequently suffered a significant brain injury that left him a spastic quadriplegic and is non-verbal and tube fed.
“Our first question was, “what is mitochondrial disease?”, reflects Blaine.
Mitochondria are the powerhouses of our cells and produce the energy we need to sustain life. Mitochondrial disease can be genetically inherited and affects cellular energy production, and in Evan’s case with the right combination of stressors, can result in a metabolic ‘energy crisis’ that affects the body’s energy-intensive organs.
“14 years later, we are still hunting for the ‘smoking gun’ genetic mutation that resulted in Evan’s mitochondrial dysfunction.”
Currently, there is no cure and minimal therapies for mitochondrial disease. The standard of care for mitochondrial disease is the management of symptoms and non-specific supportive care. As with many rare diseases, the impact on the quality of life of patients and families is devastating and unpredictable, with lifelong and significant physical, emotional, social, and financial implications.
Motivated to find solutions to transform the outlook and quality of life for those affected by mitochondrial disease and to help others going through similar experiences, Blaine co-founded the MitoCanada Foundation in 2010. Since then, MitoCanada has raised millions of dollars and built a national community connecting patients, scientists, clinicians, and industry, all dedicated to creating a world where lives are powered by healthy mitochondria.
Blaine, an accomplished runner and athlete, uses running to clear his head, stay fit and more importantly, advocate for a greater purpose. Often finishing at the top of the podium in marathons and ultramarathons, Blaine’s efforts recently won him a title in the Guinness Book of World Records as the fastest marathon dressed as a battery (in 2 hours and 59 minutes). The battery costume was a simple way to create awareness of mitochondrial disease through the analogy of mitochondria being the ‘batteries of our cells’.
Blaine’s fierce determination and goal-oriented approach to life is what sets him apart, tackling challenges head on. His epic running adventures and accomplishments are a channel for his advocacy efforts, having raised over $3 million to advance diagnostics, fund research and increase awareness and support for individuals and families affected by mitochondrial disease.
As a true champion for the community, Blaine has been recognized with several awards, including the Kickass Canadian, Calgary Top 40 Under 40 and Dave Kelly Live Award. He has attended the prestigious Governor General’s Canadian Leadership Conference and has years of governance experience on multiple Boards.
But his true passion and inspiration are his family.
“I think that, because of Evan’s situation, my family and I actually enjoy a greater quality of life, if you can believe that, in the sense that we really make the most of everything. We’re reminded daily what’s important in life, and that’s looking after our family and looking after our health.”
At Lumiio, Blaine’s perspective fuels his unwavering desire to make the future brighter for patients and people affected by rare disease by providing the technology, tools, resources, and hope needed. Many rare diseases do not have a formal organization to support their community which leads to gaps in education, awareness, funding of research, and patients connecting with others. The massive unmet need in rare disease often leaves families in a state of crisis, a situation Lumiio is working hard to change.
“Lumiio has developed an advanced technology platform and built an incredibly passionate team of innovative experts that can help accelerate clinical research and ultimately provide quicker access to life-saving treatments for those desperate patients who need it most,” says Blaine. “Our technology platform is the foundation to realizing our vision of a future where patients are empowered to own their health journey through easily accessible education, data, and predictive analytics to inform real-time care.”
To hear more about Blaine and his family’s journey with rare disease, read his story in his own words here.
Lumiio is on mission to empower every rare disease community with the data, tools and infrastructure necessary to unlock the future of personalized rare disease treatment and improved patient outcomes.
For more about Lumiio visit https://www.lumiio.com/
Contact: Natalie Swanson, Manager Marketing & Communications