MitoCanada

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.”

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 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?”

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 howevershe 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.

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.

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:

Join Vancouver Island families and supporters living with mitochondrial disease for the 3rd annual Hazel’s Light Up for Mito Walk! This annual walk is led by MitoCanada’s mitoAmbassador Hazel Currie, who lives with MNGIE (mitochondrial neurogastrointestinal encephalopathy), an ultra-rare mitochondrial disease. While thousands of Canadians live with mitochondrial disease, Hazel remains the only known case of MNGIE in British Columbia and is using her energy to help raise awareness, inspire hope and educate others about mito. 

Event Details

📅 Saturday, September 20th, 2025

🕢 7:30 PM Start

📍 Christ Church Cathedral front steps (Quadra Street & Courtney Street), Victoria, BC

♿ This walk/roll is fully accessible

✨ No registration required, just show up in your MitoCanada gear or dazzle in bright green!

Hazel will take you for a stroll through downtown Victoria, taking in heritage buildings and local businesses glowing green, the walk will end at the BC Legislature, where the ceremonial entrance alcove and fountains will be lit in vibrant green in support of mitochondrial disease awareness. By joining, you’ll be part of a global movement alongside over 300 landmarks that have lit up worldwide, including Niagara Falls, Rome’s Colosseum, the CN Tower, Signal Hill Tower, Science World and BC Place.

Can’t join in person?

There are still plenty of ways to take part during World Mitochondrial Disease Week (September 15–21, 2025):

• Swap your porch or balcony light for a green bulb
• Snap photos of green-lit landmarks and tag @mitocanada and #WorldMitoWeek2025 #LightUpForMito (Instagram, Facebook, LinkedIn)
• Donate (below) to MitoCanada to fuel research, awareness and help MitoCanada ensure all lives are powered by healthy mitochondria
• Spread the word in your community to raise awareness

This World Mitochondrial Disease Week, let’s make Victoria, BC the most lit-up community in Canada to support those living with mitochondrial disease! 

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:

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.⁠
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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.”⁠
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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.”
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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. ⁠
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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:

When Cheryl launched Be There Races, she knew she wanted to align her events with a meaningful cause. “Knowing Blaine and the huge involvement that MitoCanada has in the running community, it was a natural fit,” she shares.

Since then, Be There Races has been raising funds through events in support of MitoCanada — and one event in particular holds a special place in Cheryl’s heart.

“In 2017, we started a sprint triathlon and duathlon called ‘Tri for Evan,’ named for Blaine and Sarah’s son,” she says. “Over the years, we’ve had hundreds of people participate and raise funds for MitoCanada. Blaine, Sarah, and Evan even participated some years. It was always such a great pleasure to have the whole Penny family at the race.”

This year, Tri for Evan 2025 will be the grand finale — a celebration of Evan’s legacy and the impact this event has had.

Cheryl’s message to the MitoCommunity? “Keep on moving!”

Want to keep moving this summer? Sign up for Tri for Evan on June 7th and be part of something meaningful.

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:

15 Stories for 15 Years: Meet Dr. Mark Tarnopolsky
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As we celebrate 15 years of MitoCanada, we’re sharing the stories of those who make this community so special. Today, we’re highlighting Dr.Mark Tarnopolsky — a pioneering clinician-scientist whose contributions have shaped mitochondrial medicine in Canada and beyond.

Dr. Tarnopolsky is a Professor of Pediatrics and Medicine at McMaster University and the Division Head of Neuromuscular and Neurometabolic Disorders at McMaster Children’s Hospital. He also holds the Hamilton Health Sciences Foundation Chair in Neuromuscular Disorders and is the CEO and CSO of Exerkine Corporation.

His connection to MitoCanada goes all the way back to the very beginning. “I first became aware of this group when @Blaine Penny reached out to me and stayed at my place for the inaugural meeting in Hamilton 15 years ago,” recalls Dr. Tarnopolsky. “I didn’t know he was such a good runner — he came on our usual Saturday morning two-hour trail run and had no problem keeping up! I’ve had many wonderful runs with Blaine over the years.”

Reflecting on that first meeting, Dr. Tarnopolsky says it still stands out as one of the most meaningful moments in his journey with MitoCanada. “It was the beginning of such a great organization,” he shares.

Since then, Dr. Tarnopolsky has witnessed the profound impact MitoCanada has made. “MitoCanada has provided massive awareness of the disorder and support for families,” he says. “They’ve also provided seed funding for important research projects that have led to great advancements in therapy.”

Looking to the future, Dr. Tarnopolsky hopes to see MitoCanada continue expanding its support and impact. “I hope the organization continues its great support for patients and reaches an even higher level of support for mitochondrial disease therapies,” he says. And his greatest hope for the mito community in the next 15 years? “Universal and free access to effective therapies,” he says.

Today, we honour Dr. Tarnopolsky’s contributions to the field and his dedication to 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:

In 2008, Blaine and his family’s world changed forever when his four-year-old son, Evan, went in for what was supposed to be a routine appendectomy. Instead of waking up as expected, Evan fell into a coma. Five days later, he regained consciousness, but he had changed forever, becoming non-verbal and needing to be tube-fed. After months of uncertainty, testing led to a probable mitochondrial disease diagnosis. Read their full story on our website: https://mitocanada.org/evan-penny/

Determined to turn heartbreak into action, Blaine channelled his endurance as a marathoner into raising awareness and funds for mito research.

In 2010, he ran a gruelling 100-kilometre ultra-marathon through Alberta’s mountains, marking the start of what would become MitoCanada — a national charity dedicated to supporting Canadians impacted by mitochondrial disease.

Today, we honour Blaine and Evan’s story — the spark that ignited 15 years of progress, community, and hope.

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:

From that moment on, Marsha didn’t just find answers — she found community, purpose, and the power of connection.

“What inspires me the most to be involved with MitoCanada is the charity’s desire to truly make a difference in the lives of people living with mitochondrial disease,” she says. “MitoCanada has included me in several initiatives, from reviewing research grant applications to attending seminars. They understand that research and support are the best ways to help manage this disease.”

Marsha has been an impactful part of the MitoCommunity for many years. “Being part of the MitoCanada family has made a huge impact on my life,” she shares. “The connections I’ve made with other patients going through the same experiences as me have been meaningful. Whether it was attending an event or organizing one as the Team MitoCanada lead for Saskatchewan, the people have made all the difference.”

Through her connection with MitoCanada, Marsha is most proud of sharing her story. “Sharing my story wasn’t easy at first, but MitoCanada helped me realize that my story has the ability to inspire and educate others,” she says. “I didn’t imagine the impact it would have. By sharing my experience, I was able to connect families with resources in our province and with MitoCanada for trusted support.”

Marsha is also very proud of her family’s involvement with MitoCanada. Her husband, Jon Paradowski, famously ran across Canada virtually (7,269 kms!) in 2021 to celebrate MitoCanada’s 10th anniversary and raise awareness for mito. (Read more about that here: https://mitocanada.org/get-involved/historicalevents/jons-virtual-run-across-canada/)

Marsha’s message to the MitoCommunity is pure and simple: “Love yourself, even when your body is failing you,” she says. “Stay positive with courage and a grateful heart. And always remember to ask for help — you are not alone.”

Marsha’s story is a powerful reminder of the strength within our MitoCommunity. Read her full journey here: https://mitocanada.org/marsha-crossman/

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: