KateMurray

About Kate Murray

This author has not yet filled in any details.
So far Kate Murray has created 36 blog entries.

15 Stories for 15 Years: Meet John Fisher

As we celebrate 15 years of MitoCanada, we’re sharing the stories of those who make this community so special. Today, we’re sharing the story of John Fisher from Mississauga, Ontario.

When John Fisher was diagnosed with mitochondrial myopathy in 1982, which he notes he probably had since he was 6 or 7 years old, he was told he was one in a million.

The words stayed with John. They made him feel unique, but also isolated. His diagnosis was confirmed by Dr. Humphrey, and during that same period, Dr. Crawford, an ophthalmologist at SickKids, performed a surgery to attach his eyelids to his eyebrow muscles to keep them from drooping again. Later, John learned the condition he had was called chronic progressive external ophthalmoplegia (CPEO).

For years, he lived with that diagnosis on his own. “I’ve faced misunderstanding, ignorance, and even discrimination because of how I look and sound. Physically, I couldn’t always do things to the level I wanted, especially in sports or activities that required strength. But I learned to adapt, and I’ve done quite well,” says John. Living with mito for over 40 years has given John a deep understanding of its challenges, but also of the resilience it takes to live well in spite of them.

As time went on, John began to realize that his condition wasn’t as rare as he had once been told. Through his neurologist, Dr. Mark Tarnopolsky, and his own research, he started learning more about mitochondrial disease. That’s how John found MitoCanada, and, “how I connected with Kate Murray. It was her passion for this cause and her relentless advocacy for the MitoCommunity that inspired me to get involved,” shares John. He became a monthly donor because he wanted to help fuel that energy and make a difference wherever he could.

What stands out most to John about MitoCanada is the sense of community. When he was first diagnosed, there was no one to talk to. It took him 40 years to have a real conversation with someone else living with mito. John shares, “Now, thanks to MitoCanada, people have a place to turn, share experiences, find understanding, and know they’re not alone. That means a lot to me.”

John doesn’t give for his own benefit anymore. He gives for others, for the newly diagnosed, for families still searching for answers, and for those who might not have the strength or the voice to advocate for themselves. John finds comfort in knowing that his monthly gift helps MitoCanada do work to educate, to connect, and to push for better care and understanding.

John says, “I believe deeply in the human spirit and in the power of generosity. As Jack Welch, founder of my MBA program, used to say, we need ‘every brain in the game,’ and we all carry a ‘generosity gene’ that should be used more often.” To John, MitoCanada embodies both ideas. He believes it’s a place where compassion, knowledge, and action come together to make life better for everyone touched by mitochondrial disease.

Looking ahead, John hopes his support helps MitoCanada continue to grow, by expanding the patient registry, by building networks of specialists who truly understand mito, by ensuring mental health care is part of the conversation, and by showing that mito doesn’t only affect children, it affects people of all ages and walks of life.

John shares, “After 40 years, I no longer feel like one in a million. I’m one of many, part of a community that understands, supports, and believes in each other. That’s what MitoCanada has given me.”

We’re grateful to John for inspiring our MitoCommunity by sharing his journey and dedication to MitoCanada.

Join us in fuelling the next 15 years. Every donation helps us continue this vital work and create a future where no one faces mito alone.

Be part of the journey. Donate today:

Read More

Population-Based Study of Mitochondrial Disease and Mental Health Conditions in Ontario, Canada

Science moves fastest when everyone can take part. That’s why MitoCanada is committed to empowering our community with knowledge. By translating cutting-edge mitochondrial research into clear, easy-to-understand summaries, we aim to nurture curiosity, strengthen understanding, and build confidence in the science driving hope and progress.

Lay Summary: Population-Based Study of Mitochondrial Disease and Mental Health Conditions in Ontario, Canada

Authors:

Rosella, L. C., Hurst, M., Buajitti, E., Samson, T., Young, L. T., & Andreazza, A. C.

What’s this research about?

This ground-breaking study explored how often mental health conditions, such as anxiety, depression, and substance use disorders, occur among people living with mitochondrial disease in Ontario, Canada. It also looked at how these mental health conditions affect hospital visits, healthcare use, and the overall cost of care.

To help interpret the results, the researchers compared the mitochondrial disease group with another chronic neurological condition, multiple sclerosis (MS), which is known to have high healthcare needs and is often associated with mental health challenges.

In this study, led by Dr. Laura C. Rosella, Dr. Ana C. Andreazza, and Dr. L. Trevor Young, researchers used population-wide health data from Ontario to reveal that people living with mitochondrial disease experience significantly higher rates of mental health conditions and healthcare use, highlighting the need for more integrated physical and mental health care.

Why is this important?

Until now, there has been very little data on how mitochondrial disease and mental health intersect on a large scale. While individual studies and patient experiences have shown that mitochondrial dysfunction can affect the brain and contribute to mental health challenges, population-wide research hadn’t been done.

Understanding these patterns is crucial for improving care. People with mitochondrial disease often face complex health challenges, and if mental health concerns are common and overlooked, patients may experience worse health outcomes and greater barriers to care. This research helps healthcare systems recognize those needs so they can offer more holistic, compassionate, and effective support.

How did they study this? 

The research team used Ontario’s provincial healthcare databases, which record information from hospitals, emergency departments, and physician visits.

They identified 1,495 people who had been hospitalized at least once for mitochondrial disease between 2005 and 2019. For comparison, they also studied 8,482 people hospitalized for multiple sclerosis during the same period.

By securely linking health data across different sources, the researchers were able to see:

  • Whether a person had been treated for a mental health condition within the three years before their mitochondrial diagnosis
  • How often patients visited hospitals, emergency departments, or doctors
  • How much their healthcare cost before and after their diagnosis

This approach allowed the researchers to see big-picture trends across the entire province, rather than relying on individual clinics or small samples.

What did they find?

The results were striking. People living with mitochondrial disease were twice as likely to have a mental health condition as those with MS:

  • 18% of the mitochondrial group had a mental health condition
  • 9% of the MS group did

Among mitochondrial patients, the most common mental health challenges were:

  • Substance-related disorders (52%)
  • Mood or affective disorders, such as depression or bipolar disorder (32%)
  • Anxiety and adjustment disorders (29%)

Healthcare use was also much higher for people with both mitochondrial disease and mental illness. Nearly half (49%) of these patients were hospitalized within one year, compared to only 12% of MS patients without a mental health condition.

Costs told a similar story. Mitochondrial disease patients with mental health conditions had the highest healthcare costs of all groups, both before and after their diagnosis, showing just how significant the burden of care can be for these individuals and families.

What does this mean for mitochondrial disease research?

This is the first-ever population-wide study to confirm that mental health conditions are common and impactful among people with mitochondrial disease.

The findings highlight that mental health and mitochondrial health are deeply connected. This connection likely reflects how mitochondrial dysfunction in brain cells can affect neurotransmitters, chemicals that regulate mood, energy, and cognition.

For researchers and clinicians, this study emphasizes the urgent need for:

  • Integrated care that addresses both physical and mental health
  • Better screening and support for depression, anxiety, and substance use
  • More awareness and training for healthcare providers so they can recognize and treat these issues early

For the mitoCommunity, it validates what many families have long known, that the emotional and psychological toll of mitochondrial disease deserves the same attention and resources as the physical symptoms.

The research in simple terms

This study shows that people with mitochondrial disease are more likely to experience mental health conditions and that these challenges lead to higher hospital use and medical costs. It paints a clearer picture of how big the problem is and helps make the case for more comprehensive care and support.

Why this matters to the MitoCommunity

This research is a powerful step forward in recognizing the whole person behind the diagnosis. It tells healthcare systems, and the world, that mitochondrial disease affects not just muscles and organs, but also mental health and emotional wellbeing.

For patients and caregivers, it reinforces that mental health challenges are common and deserve compassion, understanding, and access to care. For advocates, it provides valuable data to push for better mental health services and integrated supports for mito families.

Acknowledgment

This important study was led by Dr. Laura C. Rosella, Dr. Ana C. Andreazza, and Dr. L. Trevor Young, with contributions from Mackenzie Hurst, Emmalin Buajitti, and Thomas Samson. Their work was supported by the Mitochondrial Innovation Initiative (MITO2i) at the University of Toronto, the Thomas Zachos Chair, and the MitoCanada Foundation. The research was published in Orphanet Journal of Rare Diseases in 2025.

Explore the orginial publication or download our layperson article today:

Do you have a question about this article? If so, we’d like to hear from you. Please send us an email!

Read More

Silencing Mitochondrial Gene Expression in Living Cells

Science moves fastest when everyone can take part. That’s why MitoCanada is committed to empowering our community with knowledge. By translating cutting-edge mitochondrial research into clear, easy-to-understand summaries, we aim to nurture curiosity, strengthen understanding, and build confidence in the science driving hope and progress.

Lay Summary: Silencing Mitochondrial Genes Expression in Living Cells

Authors:

Cruz-Zaragoza, L.D., Andree, M., Richter-Dennerlein, R., Mårtensson, C.U., Deimling, L., Culley, S., Peter, B., Grzyb, K., Silvander, C., Lindberg, M., Zickermann, V., Arlt, H., Schliebs, W., Amunts, A., Spåhr, H., Spang, A., Rugarli, E.I., Wiedemann, N., Callegari, S., Larsson, N.-G., and Dennerlein, S.

What’s this research about?

Mitochondria are often called the “powerhouses” of our cells because they produce the energy that keeps every tissue and organ working. To do this, mitochondria rely on tiny instructions written in their own set of genes, separate from the DNA in the cell’s nucleus. These mitochondrial genes make a small number of essential proteins that help the cell turn oxygen and nutrients into usable energy.

For years, scientists have wanted to study what happens when specific mitochondrial genes are turned off, but this has been nearly impossible to do inside living cells. Traditional gene-editing tools, like CRISPR, don’t easily work in mitochondria. This has made it hard to understand how mitochondrial genes interact with the rest of the cell, and what goes wrong when they stop working properly.

In this study, led by Dr. Luis D. Cruz-Zaragoza, Dr. Stefan Dennerlein, and colleagues, researchers developed a new way to temporarily “silence” or switch off individual mitochondrial genes inside living cells, giving researchers a powerful new tool to study mitochondrial function in real time.

Why is this important?

Understanding how mitochondria control their own genes is key to understanding many human diseases. Problems with mitochondrial gene expression, the process where genes make the proteins needed for energy production, are linked to serious conditions that can affect the brain, muscles, heart and other organs.

Until now, researchers could only study mitochondrial genes indirectly, often using isolated mitochondria or models that didn’t reflect how cells work in real life. This new method allows researchers to study the process as it happens in living cells, offering a more accurate view of how mitochondria communicate with the rest of the cell and respond when things go wrong.

By helping researchers look closely at the timing, coordination, and response of cells when mitochondrial genes are disrupted, this approach brings research a step closer to understanding the biological roots of mitochondrial disorders.

How did they study this?

The researchers designed small, custom-built molecules called peptide-morpholino chimeras. A chimera refers to a living thing that has cells from two or more different sources. In research, scientists create chimeras by combining cells from different species (i.e., adding human cells to a mouse embryo) to study how cells grow or how disease works.

In this study, each chimera combines two parts: a “delivery tag” that helps it enter mitochondria, and a genetic “message blocker” that attaches to a specific piece of mitochondrial RNA, the molecule that carries genetic instructions from DNA to make proteins.

When these chimeras were introduced into human cells grown in the lab, they successfully traveled into mitochondria and attached to their target RNAs. This prevented the chosen gene from making its protein, effectively silencing that gene. The researchers could then watch how the cell responded over time.

They tested the tool on several mitochondrial genes that are part of the oxidative phosphorylation (OXPHOS) system, the machinery responsible for producing energy. By switching off these genes one at a time, they tracked how each change affected the cell’s metabolism, protein production, and communication between mitochondria and the nucleus.

What did they find?

The new tool worked reliably and specifically. It could silence targeted mitochondrial genes within hours, and the effect lasted for several days. When certain genes were turned off, the researchers observed clear changes in the mitochondria’s ability to produce energy. Importantly, the tool only affected the targeted genes, it didn’t interfere with unrelated parts of the cell.

When the team silenced genes involved in the energy-making complexes (called complexes I, III, IV, and V), they saw a drop in activity in those complexes, confirming that the silencing was precise. They also found that when one mitochondrial gene stopped working, it triggered specific responses in the nucleus, showing how tightly connected these two genetic systems are.

Over time, they were able to watch how mitochondria adjusted to the loss of certain proteins and even identified new helper proteins that may assist in assembling and maintaining the energy complexes.

What does this mean for mitochondrial disease research?

This study doesn’t present a therapy or treatment, but it offers a powerful new research tool. By making it possible to silence specific mitochondrial genes in living cells, scientists can now explore how mutations or defects in these genes lead to disease.

This could improve how researchers model mitochondrial diseases in the lab, help them study how cells respond to mitochondrial stress, and reveal new molecular players involved in energy production. Over time, these insights could shape future strategies for understanding, and eventually addressing, mitochondrial dysfunction.

The research in simple terms

The researchers found a way to temporarily turn off single mitochondrial genes inside living cells. This lets them see what happens when specific genes stop working, helping to uncover how each one contributes to making cellular energy. It’s a bit like being able to unplug one wire in a complex electrical system to see exactly what that wire controls.

Why this matters to the MitoCommunity

For people and families affected by mitochondrial disease, this kind of research builds the foundation for future progress. By improving the tools used to study mitochondria, researchers can make faster, more accurate discoveries about how these tiny energy producers function and fail.

While this research doesn’t directly lead to a treatment, it makes the science more precise, and that precision is what helps move the field forward. Every step that helps researchers understand the “how” and “why” behind mitochondrial function brings us closer to better diagnostics, improved disease models, and, someday, targeted therapies

Acknowledgment

This research was led by Dr. Luis D. Cruz-Zaragoza and Dr. Stefan Dennerlein, with contributions from an international team of scientists including Dr. Nils-Göran Larsson, Dr. Simona Callegari, Dr. Elena Rugarli, and collaborators across Sweden, Germany, and Italy. Together, their work represents a major collaborative effort to expand the scientific tools available for studying mitochondrial gene function in living cells.

Explore the orginial publication or download our layperson article today:

Do you have a question about this article? If so, we’d like to hear from you. Please send us an email!

Read More

Mitochondrial-Targeted Therapy Prevents Early Onset Muscle Weakness in Ovarian Cancer

Science moves fastest when everyone can take part. That’s why MitoCanada is committed to empowering our community with knowledge. By translating cutting-edge mitochondrial research into clear, easy-to-understand summaries, we aim to nurture curiosity, strengthen understanding, and build confidence in the science driving hope and progress.

Lay Summary: Mitochondrial-Targeted Therapy Prevents Early Onset Muscle Weakness in Ovarian Cancer

Authors:
Luca J. Delfinis¹†, Shahrzad Khajehzadehshoushtar¹†, Luke D. Flewwelling¹, Nathaniel J. Andrews¹, Madison C. Garibotti¹, Shivam Gandhi¹, Aditya N. Brahmbhatt¹, Brooke A. Morris¹, Bianca Garlisi², Sylvia Lauks², Caroline Aitken², Leslie Ogilvie⁴, Stavroula Tsitkanou³, Jeremy A. Simpson⁴, Nicholas P. Greene³, Arthur J. Cheng¹, Jim Petrik², and Christopher G.R. Perry¹*

What’s this research about?

This study explored how mitochondrial health affects muscle strength during cancer, and whether a special antioxidant therapy could protect muscles from weakening. The research team focused on ovarian cancer, which often causes cachexia, a condition where muscles waste away, leading to fatigue, weakness, and poor quality of life.

But the scientists made an important discovery: muscle weakness actually starts before muscles shrink or lose size. That means something other than muscle loss, such as mitochondrial dysfunction, might be the early cause of this weakness.

What are mitochondria and why do they matter?

Mitochondria are the “power houses” inside our cells. They generate the energy (ATP) that our muscles need to contract and function. When they’re damaged or stressed, as often happens in cancer, they can produce too many reactive oxygen species (ROS), or “free radicals.” These molecules can damage cells and lead to fatigue and weakness.

The big question

Can improving mitochondrial health before muscle loss occurs protect strength in people with cancer?

How did they study this?

The research team used a mouse model (a research method using mice that share important biological similarities with humans) of ovarian cancer that closely mimics how the disease progresses in humans. They treated some mice with a compound called SkQ1, a mitochondria-targeted antioxidant that acts like a shield inside the mitochondria, reducing oxidative stress and helping mitochondria function better.

They tested:

  • Muscle strength in both the legs and the diaphragm (breathing muscle)
  • Mitochondrial energy production and oxygen use
  • Signs of inflammation and oxidative stress

What did they find?

  • Muscle weakness happened early, even before the muscles showed signs of shrinking (atrophy).
  • SkQ1 helped preserve muscle strengthin both early and late stages of cancer.
  • SkQ1 did not stop muscle loss, but it made muscles stronger and more efficient despite atrophy.
  • The therapy improved calcium handling inside muscle cells, helping them contract properly. Calcium handling refers to how muscle cells control the movement of calcium, an essential mineral that acts like an on/off switch for muscle contraction.
  • The positive effects were linked to healthier mitochondria, less oxidative stress and more stable energy metabolism.

In short, SkQ1 helped keep muscles “powered up” longer, even while cancer progressed.

Why is this important?

This is one of the first studies to show that muscle weakness and muscle wasting are not the same thing, and that mitochondria play a key role in strength loss during cancer.

By targeting mitochondria directly, scientists may be able to:

  • Delay or reduce early weakness that affects mobility and breathing
  • Improve quality of life for people living with cancer
  • Potentially make the body more resilient during cancer treatment

What could this mean for future therapies?

The findings highlight mitochondria as a promising therapeutic target for cancer-related muscle weakness.
If similar results can be confirmed in humans, mitochondrial-targeted therapies like SkQ1 (or similar compounds such as MitoQ and SS-31) could one day:

  • Help people maintain strength and independence during cancer
  • Complement existing treatments
  • Improve recovery and energy balance in other diseases linked to mitochondrial dysfunction

 In simple terms

Cancer doesn’t just cause muscles to shrink, it makes them weak by hurting their mitochondria first. This research shows that by protecting the mitochondria early, we might keep muscles stronger for longer, even in the face of disease.

Why this matters to the MitoCommunity

This study deepens our understanding of how mitochondrial dysfunction contributes to weakness and fatigue, symptoms shared by people with mitochondrial disease. It reinforces that muscle health depends on mitochondrial health, and that therapies aimed at stabilizing mitochondrial function can have far-reaching benefits, not just for cancer patients but for anyone affected by energy metabolism disorders.

For the MitoCommunity, this research offers hope that the same principles, protecting mitochondria to preserve strength and energy, could one day be applied to treating mitochondrial diseases directly.

Acknowledgment

This research was led by Dr. Christopher G.R. Perry at York University’s Muscle Health Research Centre, with contributions from Luca J. Delfinis, Shahrzad Khajehzadehshoushtar, Dr. Jim Petrik, Dr. Nicholas Greene, and colleagues from York University, the University of Guelph, and the University of Arkansas.

Their collaborative work provides new insight into how protecting mitochondrial health can help preserve muscle strength during cancer progression, deepening scientific understanding of the relationship between mitochondrial function and muscle health.

Explore the orginial publication or download our layperson article today:

Do you have a question about this article? If so, we’d like to hear from you. Please send us an email!

Read More

15 Stories for 15 Years: Meet Kailey Danks

As we celebrate 15 years of MitoCanada, we’re sharing the stories of those who make this community so special. Today, we’re sharing the story of Kailey Danks from Ajax, Ontario.

Kailey lives in Ajax with her husband and two kids. Her diagnosis journey began in childhood and stretched over seven years, finally leading to a general mitochondrial disease diagnosis after a muscle biopsy. ⁠

“Receiving a mitochondrial disease diagnosis is scary and challenging,” she shares. “With my condition I’ve experienced ptosis (droopy eyelid) and have had four surgeries along with vision loss, chronic pain, respiratory issues, and muscle weakness. But I really appreciate the support and resources I’ve accessed through MitoCanada.”

A pivotal moment came when Kailey connected with Dr. Mark Tarnopolsky and received a diagnosis of CPEO+. In his office, she noticed a poster about MitoCanada, and that connection changed everything.⁠

Through MitoCanada, Kailey became a peer support volunteer and attended the very first mitochondrial disease conference in Canada. She was also provided financial support to attend the UMDF conference in the U.S. “These conferences were life-changing for me as I met others with similar experiences and felt connected and supported,” she says.

Today, Kailey is proud to serve as a MitoCanada mitoAmbassador. “I’m very happy that I’ve just accepted this role,” she says. “I’m looking forward to sharing my story and raising awareness about MitoCanada and mitochondrial disease within my community.”

We’re grateful to Kailey for her courage, her advocacy, and her inspiring commitment to supporting others in the MitoCommunity.

Join us in fuelling the next 15 years. Every donation helps us continue this vital work and create a future where no one faces mito alone.

Be part of the journey. Donate today:

Read More

15 Stories for 15 Years: Meet Kim Good

As we celebrate 15 years of MitoCanada, we’re sharing the stories of those who make this community so special. Today, we’re highlighting Kim Good and Angelina, Free Spirit Woman of the Eagle Clan

Born on June 1, 2003, Angelina Good was a fighter from the start. Born at 32 weeks because her mom, Kim, was diagnosed with placenta previa, she spent her first two months in hospital. Angelina was born deaf in one ear, but she never let challenges hold her back. She loved animals, camping, fishing, horseback riding, soccer, skating, art, crafts, writing short stories, reading, and celebrating her Métis heritage. Horses, especially, made her feel “free and happy.” Friends and family often described her as “an old soul.”

“Angelina had a happy and mostly normal childhood,” says Kim. “She did have many health issues that we now believe were misdiagnosed, misunderstood, and undiagnosed.”

In 2017, Angelina had her first seizure, followed by a stroke the next year that left her wheelchair-bound. “We were all shocked and distraught because we had no idea what was happening or how to help her,” says Kim. “We were helpless and clueless, and our hearts shattered. She went from being an independent teenager to requiring someone with her 24/7. Her big sister Leah stepped in to help raise and care for Angelina, especially during times when I faced health issues.”

After initially being misdiagnosed with epilepsy, Angelina was eventually diagnosed with MELAS (mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes) by Dr. Samantha Marin, a Winnipeg-based pediatric neurologist and member of MitoCanada’s Research and Clinical Advisory Committee.

For Kim and her family, the diagnosis brought heartbreak, and while it did bring some answers, it also brought more questions. “We had never heard of this disease,” says Kim. “We’ve come to learn that MELAS is a rare, maternally inherited mitochondrial disorder that affects the nervous system and muscles. It’s characterized by lactic acidosis, stroke-like episodes, and encephalopathy (brain dysfunction). But what exactly did that mean for her, and for us as her caregivers and family?”

In 2019, Dr. Marin suggested they reach out to MitoCanada, which helped the family attend the fall mitoConference, co-hosted by MitoCanada and MitoNet in Toronto, Ontario. “It was overwhelming, but we came home with loving connections and a wealth of knowledge,” Kim says. “We also received guidance and information for other family members. Because of our warrior Angelina, our family now has knowledge to share for generations to come. I was adopted as a baby, so I grew up without access to my biological family’s medical history. That made Angelina’s journey to diagnosis even more complex, since we had no history to help connect the dots. As an adult, I reconnected with my birth family and discovered that many of my relatives had health issues that were likely misdiagnosed. Earlier this year, my older sister was formally diagnosed with MELAS, which confirms that this disease runs through my maternal line. Now I’ve been able to share this vital information with relatives across Canada, helping them seek proper diagnoses and care. This disease truly affects my entire family.”

Just three months before her passing in February 2025, Angelina received her spirit name, Free Spirit Woman of the Eagle Clan, in a powerful moment that reflected her Métis heritage. “She embraced this wholeheartedly,” says Kim.

Kim continues to raise awareness in Angelina’s honour: lighting up her balcony with bright green lights for World Mitochondrial Disease Week, wearing two custom mito T-shirts her oldest daughter had made for her and a mito pendant necklace she won in a MitoCanada social media giveaway (“People always ask what it means,” she says), and sharing the message she wants every family to hear: “You are not alone. It is a long, tough battle, but you are not alone.” She works hard to spread awareness however she can. “MitoCanada makes it easy with their website, social media, and events,” she adds. “MitoCanada and the MitoCommunity have been there through some of the hardest times, always providing a reply, an ear to listen, and new and hopeful information.”

We’re grateful to Kim and her family for their courage and for inspiring our MitoCommunity by sharing Angelina’s story and spirit. Kim also shares that Leah helped write Angelina’s story, ensuring her sister’s spirit lives on through her words.

Join us in fuelling the next 15 years. Every donation helps us continue this vital work and create a future where no one faces mito alone.

Be part of the journey. Donate today:

Read More

15 Stories for 15 Years: Meet Jayda Back

As we celebrate 15 years of MitoCanada, we’re sharing the stories of those who make this community so special. Today, we’re highlighting Jayda Back and her son, mighty Decklan!

Jayda is the proud mom of a remarkable 12-year-old boy living with mitochondrial disease. Decklan was diagnosed with Leigh syndrome at the age of five — a diagnosis that, as Jayda describes, “rocked our family’s world.” At the time, they didn’t even know what mitochondrial disease was.

Despite the devastating diagnosis, Decklan continues to defy the odds and thrive. “Life is not easy for him,” Jayda says, “but he never lets his disease stop him from trying everything.” Since day one, their family’s goal has been to give Decklan a full life — making memories every chance they have.

Jayda appreciates that MitoCanada is so invested in supporting families affected by mito. “From information about new studies and testing, to facts about mito diseases, to sharing stories about those that are affected, to fun contests and giveaways, I really appreciate it all,” she says.

Although she had heard of MitoCanada after Decklan’s diagnosis, it wasn’t until she met Richard and Megan MacDonald — some of MitoCanada’s biggest ambassadors! — at a booth during the Regina Queen City Marathon that she felt truly connected. “After meeting them, I became connected to others in the community,” says Jayda. “Being a part of this community has given us lifelong friends and connections who truly understand what we’re going through and support us unconditionally.”

Jayda has also been an incredible champion for MitoCanada. “Anytime I can bring awareness to MitoCanada and the amazing work the organization does, it makes me proud,” she says. “The more awareness we get, the more chance we’ll be able to find cures for our children and loved ones down the road.”

Jayda’s message to others in the MitoCommunity is simple: “I hope everyone who lives with mito, or is a caregiver of someone who is, takes care of themselves and truly lives every day to its fullest.”

We’re grateful to Jayda Back and family for being such an inspiring part of our MitoCommunity.

Join us in fuelling the next 15 years. Every donation helps us continue this vital work and create a future where no one faces mito alone.

Be part of the journey. Donate today:

Read More

15 Stories for 15 Years: Meet Leeanne Wilson

As we celebrate 15 years of MitoCanada, we’re sharing the stories of those who make this community so special. Today, we’re highlighting Leeanne Wilson and her son, Tanner.

Tanner was the baby who completed Leeanne and Patrick Wilson’s family. After a full-term pregnancy and normal delivery, they brought him home to join his big brother, Nolan. But as Tanner grew, they began to notice he wasn’t hitting his developmental milestones. He was slower to walk and talk and had mild eye abnormalities.

Like many parents, Leeanne and Patrick sought answers through countless medical visits. After a fall sent Tanner to the ER, an MRI was completed and they received a devastating diagnosis: Leigh syndrome, a rare mitochondrial disease. “We had never even heard of it,” says Leeanne. “When we googled it, we read that Tanner could have as little as two months or up to five years to live to the fullest. That was very hard to unread — and impossible to accept.”

Determined to learn more, Patrick began researching and came across Dr. Aneal Khan in Calgary, who agreed to see Tanner. The family travelled there from their home in Saskatoon. There, after additional tests, they learned that Tanner had Complex 1 Deficiency with Leigh symptoms, caused by his MT-ND6 gene. “We travelled home from Calgary that first time feeling a little less heavy, having more information about Tanner, but still wondering how we would navigate this ‘new normal,’” says Leeanne.

It was Dr. Khan who suggested they connect with MitoCanada and attend an upcoming conference. “That was when I found my tribe,” Leeanne shares. “A group of like-minded, like-confused, hopeful, and questioning people who understood what we were going through and could help our family navigate these rough waters called mito.”

Through MitoCanada, the Wilsons discovered they were not alone. “This group helped us realize we weren’t isolated,” says Leeanne. “Sometimes the support took the shape of a physical aid for Tanner or just a compassionate shoulder to cry on. We were surrounded by other parents all hoping, wishing, and praying for one another and for their own child.”

Today, Tanner is 12 years old and continues to amaze his family with his strength and spirit. “He is a strong warrior, a determined young man who, despite the challenges of mito, approaches life with remarkable resilience,” Leeanne says. “His spirit shines through his daily battles, teaching us invaluable lessons about courage, perseverance, and the true meaning of life.”

Wanting to raise awareness, the Wilsons organized their first Mito Glow Walk in Saskatoon during World Mitochondrial Disease Week. Friends, family, and members of the community dressed in bright green and glowing gear gathered to walk for Tanner and all the mito warriors who have fought or continue to fight this disease. The Wilsons plan to make it an annual tradition.

Leeanne says the support and resources MitoCanada provides have been invaluable. “MitoCanada continues its mission to bring awareness to a disease most have never heard of,” she says. “We’re so grateful for this inspiring and supportive community.”

Leeanne, Tanner, and the entire Wilson family inspire us with their strength, love, and determination. We’re grateful to have them as such an important part of our MitoCommunity.

Join us in fuelling the next 15 years. Every donation helps us continue this vital work and create a future where no one faces mito alone.
Be part of the journey. Donate today:

Read More

15 Stories for 15 Years: Meet Louise Gibson

As we celebrate 15 years of MitoCanada, we’re sharing the stories of those who make this community so special. Today, we’re highlighting Louise Gibson (@mymitojourney) — a passionate advocate, mitoAmbassador, and founder of Walk N’ Roll 4 Mito.

Louise began experiencing symptoms of mitochondrial disorder as a child — unexplained muscle fatigue and weakness. Her teachers misunderstood, and a gym teacher even told Louise’s mother that “Louise isn’t trying.” But her mother knew better. Louise’s attitude was always about doing her best. Eventually, she was referred to a neurology clinic in Montreal, and at age 18, she was finally diagnosed with mitochondrial disorder. At age 27, Louise was treated at McMaster Hospital. It’s at that time that her older sister Rita, who had been misdiagnosed with cerebral palsy at birth, was also diagnosed with mitochondrial disorder.

It took another 18 years to determine that both sisters had the TRMT5 deficiency. There were only two other known cases globally.

Living with mito hasn’t been easy, but Louise remains deeply committed to finding light and purpose. Her two adult children are unaffected by the disease. Louise is grateful for the unwavering support of all her family and friends.

Louise has never stopped giving back — whether it’s volunteering with Trillium Health Partners and Special Olympics Canada, sharing her lived experience with health care teams, or serving as a dedicated mitoAmbassador for MitoCanada. She also stays active with aquafit, which she calls her “medicine,” helping her manage mito and feel her best.

In 2015, Louise founded Walk N’ Roll 4 Mito in Mississauga, Ont., after participating in another walk for mito, where she realized she was the only person with mito walking the route. “When I finally finished, I was 40 minutes behind everyone else, and all the finishers were still there cheering me on,” she says. “The encouragement was so inspiring!” That moment sparked something big. Walk N’ Roll 4 Mito has since grown into a powerful, nationwide movement — and 2025 marks its 10th anniversary.

Louise now dedicates each walk to her sister Rita, who lost her battle with mito, and to all the lives lost too soon to mitochondrial disorder. “I want to show that doing something is better than nothing, and the more you push yourself, the better you feel,” she says. “Exercise is medicine, especially with mito disorders. Even though I can’t walk far anymore, I do what I can.”

Through her advocacy with MitoCanada, Louise hopes to see the organization continue building its strong foundation — expanding community support even further, and finding new ways to help improve the daily life for those living with mito.

She’s also passionate about raising awareness and funds for research. “It would have made a difference in my life and my sister Rita’s,” she says. “We may not have a cure yet — and I’m too old to benefit from mitochondrial transplantation — but the science is getting there.”

“I know I have mito,” Louise adds, “but mito doesn’t have me!”

Join us in fuelling the next 15 years. Every donation helps us continue this vital work and create a future where no one faces mito alone.
Be part of the journey. Support Louise’s MitoJourney today:

Read More

15 Stories for 15 Years: Meet Linda Pilon

As we celebrate 15 years of MitoCanada, we’re sharing the stories of those who make this community so special. Today, we’re highlighting Linda Pilon — passionate mito advocate, retired nurse, founder of Scott’s Ride and loving mom to Scott.

Linda’s journey with mitochondrial disease began in the late 1970s, when her son Scott started experiencing unexplained symptoms. At just 4 years old, Scott would sometimes get sick after swimming, biking, or gym class. As he grew older, his symptoms worsened — including headaches, failure to gain weight, seizures, and strokes that left him blind. At age 11, Scott underwent surgery for a brain tumour that was found to be non-cancerous. Sadly, he passed away shortly after a muscle biopsy was conducted.⁠
 ⁠
At the time, mitochondrial disease was virtually unknown. “In 1985, Scott’s doctor shared an article with me about MELAS, a rare mitochondrial condition,” Linda recalls. “He said he only knew of three cases — one in BC and two in New York.”⁠
 ⁠
Determined to raise awareness and honour her son’s legacy, Linda created @Scott’s Ride in 2012 — cycling with her daughter Debbie from Keremeos, BC to Toronto, ON to support mito research and awareness. “I had to do something,” she says. “There were so many people who didn’t even know what mitochondrial disease was.”
 ⁠
Since then, Linda and Debbie have organized rides, spin events, and community outreach — including awareness efforts in Kamloops, BC (including securing proclamations for World Mitochondrial Disease Week), spin events in Penticton, and participation in the Granfondo in Penticton. ⁠
 ⁠
What inspires her most about MitoCanada? “It gives people hope,” says Linda. “It connects you with others so you know you’re not alone.”

Linda’s message to the MitoCommunity? “Never give up. Keep searching for answers,” she says. “The sooner mito is diagnosed, the sooner it can be treated. More research and awareness brings us closer to a cure.”

Join us in fuelling the next 15 years. Every donation helps us continue this vital work and create a future where no one faces mito alone.
Be part of the journey. Donate today:

Read More
© Copyright 2025 MitoCanada.
Go to Top