- How did you first become involved with the mitochondrial disease community and MitoCanada?
I joined MitoCanada at a very exciting time, two months before the organization co-hosted its first national mitochondrial disease conference, in 2017.
While I wasn’t familiar with mitochondrial disease before joining MitoCanada, I was very familiar with the impact of rare diseases on patients and families, as my son was diagnosed with a rare form of an autoimmune disease when he was just five years old. At that first conference, I met many families and individuals who openly shared their arduous journey to a diagnosis, one I could deeply relate to. They also shared the barriers they faced in accessing regional support and the lack of mito therapies. The conference was an incredibly immersive experience. The time I spent with mito families and individuals, researchers and clinicians provided me with a well-rounded picture of the mitochondrial disease landscape in Canada and set a profound tone as I began work to advance MitoCanada’s goals and objectives.
I have been with MitoCanada for over four years now and have worn a number of hats during that time. Most recently, in 2020, taking on the role of CEO and co-leading the organisation with my colleague, Catherine Mulvale, Chief Development Officer. I continue to be inspired by the passion and determination of our mito community, it has been a tremendous honour.
- Tell us about the work MitoCanada does not only in Canada but within the global mito community.
For 12 years, MitoCanada has worked tirelessly to help support and protect Canadians living with or at risk of developing mitochondrial disease. To drive meaningful change, MitoCanada focuses its energy on four impact areas: research, education, awareness/advocacy and support.
From its inception, MitoCanada has been dedicated to advancing mitochondrial disease research. Our funding efforts have supported Canadian research investigating new mitochondrial therapies, exploring precision medicine and investigating the role mitochondria play in neurodegenerative and neuropsychiatric conditions.
Last year, MitoCanada launched a national patient contact registry. The data we are collecting is helping to broaden our understanding of the Canadian mitochondrial disease landscape, assisting in the development of new and impactful programmes, aiding advocacy efforts and assisting clinical trial recruitment. Laying the groundwork today, we hope our Canadian registry will be able to participate or partner in a global registry, one that will unite communities to advance the development of treatments and care for all global citizens affected by mitochondrial disease.
MitoCanada has been a long-standing partner and member of International Mito Patients (IMP), collaborating on World Mitochondrial Awareness Week initiatives, such as Light Up for Mito, which takes place every September. This year, we recruited 54 Canadian monuments to light up green, which contributed to the record breaking 332 global total. We have also participated in a number of working groups led by IMP to assist in advancing their mission to increase quality of life for people with mitochondrial disease around the globe.
We were also thrilled to partner with the Wellcome Centre for Mitochondrial Disease Research in September, taking over their Twitter account, alongside many IMP member associations, to help raise awareness.
MitoCanada is proud of its many allied partnerships. We support, collaborate on and share the initiatives led by our global partners with the Canadian community. From conferences to survey participation, clinical trial recruitment to collaborations on programs and resources, MitoCanada has been, and continues to be, a committed global partner and believes so much more can be accomplished in working together.
- You have been involved with other non-profit organisations, how has this experience helped you in your role as CEO and President of MitoCanada?
I have worked in the non-profit sector for over 15 years, with patient associations, hospitals and foundations. I am a member of multiple patient advisory committees, patient-partners in research committees and co-creation councils. I also have first-hand experience in starting my own not-for profit.
Then there is my own lived experience. I have an intimate understanding and appreciation of the complexities involved in navigating the health care system as a caregiver advocating on behalf of a child, the importance of timely access to diagnostics, therapeutics and care, and the importance in building self-advocacy skills.
I have come to learn that, despite an organisation’s size and disease-area of focus, many organisations are challenged by the same pain-points just at differing degrees. So, nothing is impossible.
My accrued experience has helped shape the future direction of MitoCanada, alongside my co-lead Catherine Mulvale. Building collaborative and trusting relationships with our community members, I am ardently committed to ensuring we remain fully accountable to the community we serve.
I would say my past experiences have shaped me to be the mito champion I am today. I am a fierce advocate for a patient-centric health care system, my entrepreneurial leadership has been well utilised in building strong community engagement, identifying new opportunities that bring social value, adopting agile approaches to be more productive and effective, taking risks and confidently venturing into unknown territory to provide the greatest community impact, all the while staying true to our North Star, energizing lives.
- Why is it so important for organisations like MitoCanada to support and fund mitochondrial research?
To drive a paradigm shift that will result in meaningful change, funding research today lays the groundwork for future mito discoveries. Research is key to advancing our understanding of mitochondrial disease so we can one day prevent the devasting onset of disease and improve the lives of those already affected. Research will help us develop better solutions to support the mito community.
I believe, we need to be bold and intrepid in our research efforts to incite change. Five years, eight physicians and two to three misdiagnoses – this is the average journey a patient takes before they receive a correct diagnosis and as a result of that journey, they have lost valuable time. Research is of the utmost importance so we can change the trajectory of one’s journey.
Let’s not underestimate the power of hope that research brings to the community. Research can unify, inspire and transform communities, who doesn’t want to play a role in that kind of change?
- Have you seen a change in Canada or globally of the awareness of mitochondrial disease since you first became involved in the community?
Undoubtedly, there has been an increase in mitochondrial disease awareness. Both in Canada and globally, there are more articles highlighting personal stories of life with mitochondrial disease, interviews with families and individuals sharing their diagnostic journeys and appeals to support research. Each article and story shared is a beacon for others to learn from and for more individuals to come forward and share their lived experiences. It is incredibly inspiring to see mitochondrial awareness growing in the digital space.
There isn’t a day that goes by now that I don’t receive an update on mitochondrial research studies, a new discovery or clinical trial updates; a far cry from my early days. I believe we are well positioned to see a spike in public engagement as the health narrative is expanding. There’s a growing interest and curiosity among the public to learn more about the mitochondria.
Headlines are now highlighting the influence mitochondria has on overall health and diseases such as Alzheimer’s, Parkinson’s, cancer and aging. NASA has even made headlines with its research investigating the changes mitochondria undergo while in space. National Geographic has written a series of articles on the role of mitochondria in health, organ transplantation, energy production, using mitochondrial DNA (mtDNA) to pinpoint the origins of humans. These types of articles push mitochondria into the mainstream, priming us for deeper conversations about mitochondrial disease, protecting and enhancing mitochondrial health, an opportunity for greater awareness building.
- What are your hopes for the future for the mitochondrial disease community?
We all hope for, and are invested in, discovering strategies to prevent and cures for mitochondrial disease.
Until that time, my hope for the future is that we see drastic improvements in the diagnostic journey. I envision a future where those suspected of having a mitochondrial disease are identified as “at-risk” early on by family practitioners and are referred to specialists for timely investigations. My hope is that we see greater accessibility to next generation sequencing to close the lengthy gap in time-to-diagnosis. My hope is that we see major breakthroughs in the development of treatments for mitochondrial disease, such as small molecule and gene therapies – providing that necessary shift away from symptom-based treatments and focusing on restorative therapies. It is also my hope to see the adoption of mitochondrial replacement therapy (MRT), also referred to as mitochondrial donation – a future where we have the ability to prevent the transmission of mtDNA mutations and provide future children the opportunity to lead full, happy and productive lives.
- What advice would you give to patients and families affected by mitochondrial disease?
Regardless of where you are in your mito journey, newly diagnosed or not, it is important to have a good understanding of your diagnosis. However, you cannot learn everything overnight and learning is a life-long process. Work closely and collaboratively with your doctors and other health professionals. Your specialists and clinic nurses are there to build your knowledge and confidence in living with mito, as well as guide you in management strategies.
MitoCanada is here to support you on your mito journey. We are big believers that knowledge is power and to ensure you have access to the most up to date, trusted and peer-reviewed information, MitoCanada continues to build impactful tools and educational resources you can count on. We are here to help you navigate the path ahead and empower you, be it through clinical trial opportunities, participating in research initiatives, supporting mito youth through our MitoScholars programme, participating in our patient registry to increase our understanding of mitochondrial disease or introducing you to our MitoMentors. MitoCanada is dedicated to empowering, enhancing and energizing the lives of Canadians living with mito.
You are not alone.