KateMurray

About Kate Murray

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So far Kate Murray has created 68 blog entries.

Content Use & Collaboration

Content Use and Collaboration

At MitoCanada, the stories, images, and resources we share are grounded in the lived experiences of individuals and families, and in collaboration with clinicians and researchers across Canada and beyond.

This content is shared with us through trust and partnership. We carry a responsibility to ensure it is used with care, respect, and integrity.

Our Commitment to Stewardship

We are stewards of the content entrusted to us, whether it reflects a personal story, a research partnership, or an educational resource.

This means:

  • Respecting how stories and contributions are shared and represented
  • Ensuring individuals, families, and collaborators remain informed about how content is used
  • Protecting the context, voice, and intent behind each contribution
  • Upholding accuracy and integrity in research-informed content

This approach is central to how we honour the generosity and collaboration of our community and partners.

Scope of Content

This guidance applies to all MitoCanada content, including but not limited to:

  • Faces of Mito and other patient storytelling initiatives (e.g., 15 Stories for 15 Years)
  • MitoInsights and research translation content developed with researcher partners
  • Educational resources, guides, and infographics
  • Images, graphics, and digital assets shared across our platforms

Use of MitoCanada Content

All MitoCanada content is the property of MitoCanada and/or its contributors and collaborators and is protected by copyright.

Content may not be:

  • Reproduced, adapted, or modified without written permission from MitoCanada
  • Rebranded or presented as originating from another organization
  • Shared publicly without appropriate attribution and prior approval

Requesting Permission

We welcome opportunities to collaborate and amplify community voices and research in a way that is thoughtful and respectful.

If you are interested in sharing or using MitoCanada content, please contact us in advance. This allows us to:

  • Confirm consent with individuals and families, where applicable
  • Align with research partners on appropriate use and representation
  • Ensure content is shared accurately, respectfully, and in the right context

To start a conversation, please contact: communications@mitocanada.org

Our Approach to Collaboration

We believe collaboration strengthens awareness, education, and impact across the mitochondrial disease community.

Meaningful collaboration is built on:

  • Transparency and open communication
  • Respect for ownership, contribution, and consent
  • A shared commitment to centring patient and family voices
  • Integrity in representing research and lived experience

We are always open to working together in ways that align with these values.

A Note on Trust

Every story, insight, and resource shared through MitoCanada reflects a contribution from someone who has placed their trust in us.

Protecting that trust is not only a responsibility, it is a commitment we uphold in every partnership, every collaboration, and every piece of content we share.

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MitoRevolution Community Interest Form

Thank you for your interest in MitoRevolution

This initiative brings together patient, family and community perspectives across a wide range of health areas, including primary mitochondrial disease, to help inform MitoRevolution’s research, engagement and education efforts.

​We welcome individuals with lived experience, caregivers, and advocates from diverse communities. Please share a few details below so we can better understand your interest and how you’d like to connect with us and get involved.

Privacy note: The information you provide will be used by MitoCanada and the MitoRevolution team to share engagement opportunities with you, based on your expressed interest. Your information will be handled in accordance with applicable privacy standards, including the Personal Health Information Protection Act (PHIPA).

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Meet Alyson

My name is Alyson. I live in Red Deer, Alberta. I am fortunate to live in an adult condominium that arranges social activities that I can participate in to help keep me active. Our building’s backyard is an amazing, wooded area with paved pathways that enable me to be out in nature and be mobile as much as possible.

After many years of trying to determine the source of many symptoms I was experiencing, I was clinically diagnosed with mito in 2017, a year after my biological mom received her genetic diagnosis. I received a genetic confirmation in 2018. This disease has been inherited by multiple family members as well, and we all experience varying symptoms and are impacted differently.

MitoCanada has provided many resources for me to learn about mitochondrial disease, and it explains the information in simplified terms, so it is not confusing. I often provide links from the website to other patients who sometimes struggle to find accurate or easy-to-understand information.

I haven’t had many opportunities to complete in-person volunteering for MitoCanada, but I share the fundraising events and the knowledge posts that are submitted on the MitoCanada social media platforms. I also participate in the Peer2Peer Facebook group that MitoCanada has created for mito patients and families to connect with each other. I am an administrator on a few other mito-related Facebook groups as well.

My vision for MitoCanada is that it will become even more recognizable so that it can continue to provide support for the mitochondrial disease community in its many forms.

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Meet Louise

Hi. I’m Louise, and I live in Mississauga, Ontario.

I love volunteering on Patient and Family Advisory Committees for Trillium Health Partners, running an annual charity event for MitoCanada, working on my coin collection, and doing aquafit. My faith, loving family and friends are all important to me. I feel blessed that my 2 adult children are unaffected by mito. They have all rallied around me, encouraging me, helping me, and picking me up on those low days. I have an amazing support system!

I am so overjoyed to have MitoCanada in my life for many reasons. I believe in the work they do to help raise awareness and funds for research and education. This organization understands what I’m going through and how hard life gets sometimes. I have a personal connection with quite a few members of the board of directors, and I cherish them.
In 2015, I participated in a walk for mito and it hit me that I was the only one walking the 2.5km who had mito. Others were either being pushed in a wheelchair, or family members were walking in memory of their loved ones. When I finally finished, I was 40 min behind everyone else, and all the finishers were still there to cheer me on. The encouragement was so inspiring!
I can’t walk that distance now; however, after that year, I decided to raise awareness in my own community. I started Walk’nRoll 4 Mito in 2015 because it gives me a purpose to focus on what I can do, and I’m excited to see that it has since gone national. The support I have received from MitoCanada has been encouraging and kept me going, especially during the tough times. I want to show that doing something is better than nothing, and the more you push yourself, the better you will feel. Exercise is medicine, especially with mito disorders. Even though I can’t walk 2.5 km, I do what I can. I find that an hour in the water doing aquafit is most beneficial to me.
In 2015, when I started the Walk’nRoll, my sister Rita (who also had mito) was being pushed in a wheelchair. Rita lost her battle to mito and since 2018, the walk has been in memory of Rita and all the ones we have lost too soon to this disease.

I’m passionate about raising awareness and funds for research because it would have made a difference in my life and my sister Rita’s. I began having symptoms at the age of 8 but was not correctly diagnosed with mito until I was 18 years old. There is a huge advantage with early testing, diagnosis and education.

My vision for MitoCanada is that we would be able to get an early diagnosis so treatment can begin right away, to continue with mitochondrial transplantation research and testing and eventually find a cure.

As for me, I’ll keep fighting. I know that I have mito, but mito does not have me

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Meet Hazel

Meet Hazel

My name is Hazel Currie, and I’m proud to be involved as a MitoAmbassador. Supporting Canadians living with mito diseases is such important work and so needed. I am active with MitoCanada, supporting the organization through various fundraising and educational events, including “Hazel’s Light Up for Mito” annual walk, Mermaids for Mito, and MitoSpin in my hometown of Victoria, British Columbia. 

I believe that creating connections are key to a healthy and vibrant community. As a professional communicator in my work, I see first-hand the rewards of meaningful engagement and relationship building.

I am diagnosed with the ultra-rare mitochondrial disease, MNGIE (mitochondrial neurogastrointestinal encephalopathy). I want to educate and share with others about mito diseases, be part of creating awareness, and hopefully find better treatments and a cure. There are days I just want to curse MNGIE & its effects.

My vision is finding other MNGIE patients in Canada and around the world, so those with rare diseases know they are not alone.

I aim to lead an active lifestyle, embracing challenging hikes and walks with my husband and sons. I also enjoy cooking, reading, doing ocean dips at the beach year-round (rain, shine, or snow!), and hanging out with my affectionate dog and cat.

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Meet Keith

My name is Keith and I am a civil engineer technologist and a vice president of a civil construction company in Kelowna, BC.

I am married, have an adult stepson, and an Australian Labradoodle named Parker. I enjoy music, both listening to it and playing (not well) my guitar. Health advocacy is important to me as I live with persistent neuropathic pain, unrelated to mitochondrial disease. I am a co-author of peer-reviewed published articles, guest lecturer at universities, and present at conferences throughout North America.

My experiences with MitoCanada include supporting Mitochondrial Disease Awareness Week initiatives, including a City of Kelowna proclamation, lighting up the iconic Spirit of Sail sculpture green, assisting in the development of education resources and most recently joining MitoCanada’s Strategy for Rare Disease Drugs committee. I am focused on raising awareness and understanding of mitochondrial disease through social media; as one living with a mitochondrial disease, it is important to me to raise awareness of this rare disease. Most people, both in society and in health care, have little to no knowledge of this health condition, especially the significant effects on infants and children.

My vision for MitoCanada is to increase public awareness and understanding of mitochondrial disease, further collaboration with all levels of government, advance research for diagnosis and treatment, and expand resources and support for those living with mitochondrial disease.

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Meet Kailey

My name is Kailey and I live in Ajax, Ontario with my husband and two children. My diagnosis journey with mitochondrial disease began in childhood and took more than seven years before a muscle biopsy finally gave me some answers. Later, with the support of Dr. Mark Tarnopolsky, I was diagnosed with CPEO+. Along the way, I’ve faced ptosis (and four surgeries), vision loss, chronic pain, respiratory issues, and muscle weakness.

MitoCanada has been such an important part of my journey. I attended the very first Canadian mitochondrial disease conference, received support to join the UMDF conference in the U.S., and volunteered as a peer supporter. Each of these experiences connected me with others who truly understood what I was going through. Today, I’m proud to serve as a MitoCanada Ambassador and I look forward to raising awareness, sharing my story, and supporting others in the mito community.

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Meet CindyLynn

Hi, my name is Cindylynn. I live in Cornwall, Ontario with my husband and two children, Emery and Sophia. I’m also mom to my late son, Emil, who continues to inspire everything I do.

My personal connection to mitochondrial disease comes through Emil’s story. He was diagnosed with a rare mitochondrial disease called Alpers, and although his life was short, his story continues to guide me and fuel my passion to raise awareness, support families, and honour his memory in meaningful ways. What makes me passionate about this cause is knowing that Emil’s life can bring hope, understanding, and connection to others facing mitochondrial disease. I believe strongly in the power of community, and I want to help ensure that families affected never feel alone in their journey.

I enjoy camping, skiing, and simple board game nights with my family,  time together that has become even more meaningful since learning just how short life can be. I also take great joy in step dancing, something I’ve been doing for decades, as it’s a way to stay active and connected to tradition.

My vision for MitoCanada is to help strengthen awareness and build a supportive network across the country. By sharing stories, raising our voices, and working together, I believe we can bring hope, connection, and progress to families living with mitochondrial disease.

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Meghan Teague

Turning Personal Loss into Awareness for PPA2 Deficiency

Meghan Teague is a creative young woman with a close-knit family and a dynamic career. The 27-year-old, who lives in Oakville, Ont., works in event production as an audio-visual technician. “My job takes me all over Canada,” she says. “I get to work with all sorts of amazing people and in great locations.”

In her spare time, she enjoys being outdoors and all things creative. “I do a lot of hiking, biking, skiing, and running,” she says. “I also like to draw and paint, make my own clothes, and play piano and guitar.”

But behind her active lifestyle is a rare mitochondrial disease few people have heard of.

The children's mysterious symptoms

Growing up, the Teague family was close. Meghan and her three brothers (two older, one younger) were active kids, spending plenty of time together biking, playing  street hockey, and going to the park to play catch. “My siblings and I have always been really close,” says Meghan. “I would consider them my closest friends.”

From bike adventures with their dad to painting and playing the piano with their mom, the Teague children were supported in their athletic pursuits and encouraged in their creativity. But behind their idyllic upbringing, a medical mystery was brewing.

“Throughout childhood, my siblings and I had very negative reactions to medications and illnesses, from cough syrups and dental procedures to high fevers and viruses,” says Meghan. “We began to keep track of things ourselves, to pinpoint what caused us issues.”

At age six, after surgery for a broken arm, Meghan reacted badly to the anaesthetic and had trouble walking, sore muscles, chest pain, and vision issues for months. Doctors couldn’t figure out why. A few years later, one of her older brothers became seriously ill after consuming a small amount of alcohol. Doctors couldn’t explain the reaction, but Meghan’s mother suspected the incidents might be connected and urged her daughter to avoid alcohol as a precaution. Looking back now, Meghan believes her mother’s intuition may have saved her life.

In her second year of university, a new batch of mysterious symptoms appeared after she had experienced a viral illness and a concussion from falling off her bike: weakness, difficulty climbing the stairs, and chest and muscle pain that woke her up at night. Alarmed, Meghan sought medical advice but was told she had nothing to worry about. “After a few months I started to feel more like myself again, but I knew deep down that something wasn’t right,” she says.

Nearly a decade after her older brother’s incident, Meghan’s youngest brother Ben passed away at age 17 after consuming a small amount of alcohol. “It was devastating for our family,” says Meghan. “We were left with a piece of us missing.”

Medical professionals couldn’t find an explanation for his death. “We again had no answers as to why this was happening,” says Meghan.

After Ben’s death, their mother pushed for answers for years. Finally, after six years, doctors tested tissue from Ben and found genes consistent with PPA2 deficiency, a rare mitochondrial disease that affects how the body produces energy. “That’s when my other siblings and I were all genetically tested and found positive for PPA2 deficiency as well,” says Meghan. “Before that point, PPA2 wasn’t well-known in Canada, so our samples had to be sent to the U.S. to be tested. I was 26 years old when I was diagnosed, and it was 20 years after my first symptoms.”

PPA2 deficiency places individuals at increased risk of serious heart-related complications, including sudden-onset heart rhythm problems (arrhythmias) and weakening of the heart muscle (cardiomyopathy), particularly when the body is under stress. Muscle weakness and neurologic symptoms, such as seizures or developmental challenges, are also sometimes present. Triggers can include infections or viruses, fever, dehydration, intense physical stress, and alcohol consumption. “An accumulation of these triggers in PPA2 patients has been shown to cause sudden cardiac arrest,” says Meghan.

Over the years, she and her brothers have figured out what works best for them when it comes to managing the disease. “We’ve found healing primarily through rest and lots of fluids,” says Meghan. They’ve also learned to avoid triggers, rest fully when they’re sick or injured, and undergo regular cardiac monitoring.

Alcohol has been one of the most difficult triggers to avoid. “Alcohol could be lethal for me, or at the very least cause permanent heart damage,” says Meghan. “And many medications contain alcohol. I’ve tried to explain this to doctors and pharmacists, but sometimes they’re not very understanding. The condition is so uncommon.”

Avoiding alcohol socially has also been a challenge. “Because of the culture around drinking, even going to events or restaurants can be risky for me,” says Meghan. “Many people have misunderstood me and tried to pressure me to drink.”

Living with PPA2 deficiency has meant confronting a stark new reality. “Being diagnosed with a condition that isn’t well-known has caused me a lot of anxiety,” says Meghan. “I hate feeling like my future is unknown and out of my control. The little information available about this condition is bleak, and the death rate for PPA2 deficiency is very high. It’s hard to stay positive about it all.”

As Meghan does her best to move forward carrying a new weight on her shoulders, she also makes sure to honour the past and her youngest brother’s memory.

“My little brother was an amazing person and it hurts me to know that people can’t meet him now,” she says. “Ben had a huge heart and was kind to everyone he met. He went out of his way to make things easier for other people. That’s just the type of person he was. Whether it was helping our grandma with her physiotherapy exercises, helping our dad fix the family car, or helping me practise for my driving test, he was always there for the people he cared about.”

Meghan shares that Ben did well in school and was a skilled defenceman in hockey. “He was looking forward to university and dreamed of becoming an engineer,” she says. “At just 13, he started his own business, Bengines, doing small engine repairs. People would travel from all over to have him fix their lawnmower or snowblower, and everything he was doing was self-taught.”

His life was tragically cut short by a hidden disease that few people understood. “Ben had so much potential and it breaks my heart that he didn’t have the chance to fulfill his dreams,” says Meghan. “Nobody should have to lose their life over something like this.”

Meghan looks back at the years of mysterious health issues with no answers from a new perspective since her diagnosis. “I believe the MitoCommunity really needs  to be listened to and their symptoms seriously considered by medical professionals,” she says. “We don’t need to be made fun of by doctors for having symptoms that they don’t understand. We don’t need our symptoms to be downplayed or minimized. It shouldn’t take someone’s death to be taken seriously.”

She encourages others to advocate for themselves and to stand up if they know something’s wrong.

Meghan also advocates for better screening of PPA2 deficiency. “I hope one day we’ll have preconception screening for this condition,” she says. “It’s especially dangerous for infants and young children, and the heart damage sustained can affect them for the rest of their lives. Many families across the globe have already suffered the loss of multiple children and babies to this disease. Preconception screening could help better prepare families and healthcare professionals from the start.”

Meghan was finally diagnosed after two decades of symptoms, but by then it was too late for Ben. “I hope that telling my story might help another family out there that recognizes these symptoms in themselves,” she says. “Most people have never heard of PPA2 deficiency. More awareness of it may save someone like my little brother.”

© MitoCanada 2026. Shared with permission. Not for reuse or adaptation without consent.

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Research in MitoNutrition

Mitochondrial disease is complex and highly individualized, so it’s no surprise that nutrition research is moving toward more personalized, diagnosis-informed approaches. While we don’t yet have a single “best diet” for mitochondrial disease, growing evidence is helping clinicians better understand when nutrition strategies may be helpful, for whom, and why.

This is an encouraging direction. As research evolves, it strengthens the possibility of more refined nutrition guidance, better symptom management tools, and ultimately, improved quality of life for adults living with mito.

One of the most hopeful shifts in the field is a move away from one-size-fits-all advice and toward precision care, where nutrition strategies are tailored to a person’s specific mitochondrial diagnosis, symptoms, and metabolic risks.

This approach recognizes that different genetic conditions can affect energy pathways differently, and nutrition strategies need to match those differences (for example, fasting guidance in FAOD versus other mitochondrial conditions).

Researchers continue to explore therapies aimed at supporting mitochondrial function more directly, including targeted supplements and “metabolic support” strategies that influence how cells generate and use energy. For example, NAD⁺ biology and NAD⁺-boosting compounds (such as nicotinamide riboside and related approaches) are being actively studied across conditions involving mitochondrial health, with emerging clinical trial results in rare disorders showing mixed but evolving findings. NAD⁺ (Nicotinamide Adenine Dinucleotide) is a coenzyme found in every cell, crucial for energy metabolism, DNA repair and cellular signaling.

It’s important to note that many of these approaches are still under study, and what’s appropriate can vary widely by diagnosis. This is why specialist guidance remains essential as new options emerge.

Another rapidly growing area is the connection between gut health, the microbiome, and mitochondrial function. A 2024 review focused specifically on mitochondrial disease highlights the “mitochondria-microbiome” connection and explores how diet and microbe-produced metabolites (small organic molecules produced during metabolism) may influence mitochondrial pathways, opening up new possibilities for supportive therapies and research.

For many adults with mito who experience gastrointestinal (GI) symptoms, this research is especially meaningful because it validates that GI function isn’t “separate” from energy, it may be part of the same interconnected system.

Nutrition is a powerful tool for supporting daily living with mitochondrial disease.

By understanding the principles of MitoNutrition, balanced meals, adequate hydration, symptom-aware strategies, and appropriate supplements, individuals can make informed choices that help support energy, resilience, and overall quality of life.

As with all aspects of mito care, nutrition works best when it is personalized and team-based, guided by healthcare providers who understand both the diagnosis and the individual. Because every mitochondrial condition, and every person living with mito, is different, there is no single approach that fits all.

You are not alone on this journey. Small, thoughtful nutrition steps, taken one at a time, can add up to meaningful support over time, helping you navigate daily life with greater confidence and care.

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