MitoCanada

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.
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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.

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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.

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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.

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Determined to fight for Anakha’s future, Savitha sought out every resource she could find. She connected with MitoCanada and sent Anakha’s dad, Ajay, to attend an event, where he connected with other mito families. She learned about Dr. Tarnopolsky and the latest research on mitochondrial disease. She advocated for Anakha to start on the mito cocktail before receiving an official genetic diagnosis and built a care strategy that prioritized movement, nutrition, rest, and avoiding infections. “Our family started living by the principles that I believe ultimately saved Anakha’s life – avoid stressors, avoid infection, emphasize exercise and movement, ensure she eats and drinks properly, protect sleep, and rest,” says Savitha. “Our family was sanitizing and masking in public years before the COVID-19 pandemic.”

Against all odds, Anakha recovered skills doctors said she never would.

Now 10 years old, Anakha is thriving. “She has regained some of her vision, uses a manual wheelchair, and is a wickedly funny and intelligent fifth-grader who loves musicals, blind bags (surprise toys), reading horror novels, swimming, cheerleading, spas, and dogs,” says Savitha. Her genetic condition, multiple mitochondrial dysfunction syndrome type 3 (MMDS3), also known as IBA57 deficiency, is ultra-rare — at the time of her diagnosis, only three cases had been reported worldwide.

Today, through literature reviews and social media, Savitha has tracked about 70 children globally with the same condition, some of whom have followed similar journeys of loss and recovery. “Currently, we’re in contact with three other families: a young boy in Serbia, a young man in New York, and a young woman in Norway who is a lawyer!” says Savitha. “These families experienced the same initial regression of skills as infants, but the children slowly regained many of their skills, through therapy, hard work, parental determination, and time. I’ve also been in touch with three families who lost their children in infancy. IBA57 deficiency is a spectrum.”

Anakha has faced naysayers and disbelievers her entire life. “Whether it’s the doctor who refused to believe she was tracking light again and refused to refer Anakha to ophthalmology (Anakha went from a 1 to an 8.5 out of 10 on the Cortical Visual Impairment scale, 10 being normal vision), the speech-language therapist who told us Anakha could not understand us and would never be capable of expressive language (she was wrong and apologized to us – Anakha is incredibly verbose and loves to sing and act!), or the educators who struggle with presuming competence in the face of disability (Anakha is incredibly intelligent, and when her IEP accommodations are appropriately administered, she can show that to the world!), living life with disabilities and a life-threatening illness is always going to be a fight,” says Savitha.

Savitha and her family’s journey with MitoCanada has been one of connection and support. “When we first started our journey, resources in Canada were so limited,” she says. “But within a few years, MitoCanada grew exponentially — providing education, raising awareness, fundraising, and connecting families like ours so we didn’t feel so alone.”

Savitha now plays an active role in the community, participating in the annual Walk N’ Roll 4 Mito and encouraging her family and friends to get involved. Ajay even sits on MitoCanada’s mitoScholars committee, helping to support students impacted by mito.

Savitha’s message to the MitoCommunity? “Mitochondrial disease is a tough, multi-system, complex disorder,” says Savitha. “We, whether adult patients or caregivers, are required to juggle multiple health specialists, therapies, and conflicting advice, all while dealing with exhaustion, pain, and grief. This is a tough gig. But what I want the MitoCommunity to remember is to always keep fighting. There is no guarantee of any sort of outcome, but we must always try, and fight for ourselves, and fight for our children. Stay connected, don’t be afraid to reach out for help, and never, ever, give up.”

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.

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Just after his first birthday, Celia noticed Frankie’s eyes were very yellow. A hospital visit led to devastating news — he had acute liver failure, likely present since birth. Despite no previous signs or symptoms, all of Frankie’s major organs began shutting down. “The doctors at Stollery Children’s Hospital in Edmonton told us his mitochondria were failing, and that a liver transplant wouldn’t save his life,” says Celia. “We had never even heard of mitochondrial disease. Frankie was a very happy and healthy baby — this was a complete shock.”

In just three weeks, Frankie was gone. He passed away on May 14, 2013, at Vancouver Canuck Place.

In the depths of grief, Celia’s mother searched for support and found MitoCanada. Through the charity, Celia connected with another mom who had lost her child to mito. “We talked on the phone, and I cried through most of the conversation, but this mom was so caring and she was someone I could connect with and who understood my pain,” she says. “My mom was able to connect with a woman whose grandson passed away from mito. MitoCanada is a very supportive and inspiring community.”

MitoCanada became a place of connection, support, and inspiration for Celia and her family. “What inspires me about MitoCanada is how hard they work to spread awareness and support families,” says Celia. “When I first connected with MitoCanada in 2013, the charity was only about three years old. To see how far it has come is unbelievable! It’s hard to put into words, but it’s sad that so many more families have needed to find this community. No one should have to go through losing a loved one to mito or live with this disease, but we’re lucky that MitoCanada exists.”

Wanting to honour Frankie, Celia and her family launched The Frankie G Pub Night (@frankiegspubnight) in 2014. “We wanted to host a night where all of our family and friends could come together in memory of Frankie while raising awareness and funds for MitoCanada,” she says. “We had no idea what we were doing, but we knew it could become something special.”

Now an annual event, the fundraiser brings together 150-200 people to raise awareness and funds for MitoCanada. “I wish I didn’t have to host The Frankie G Pub Night,” Celia admits. “I wish more than anything that Frankie was still here with me. But hosting the pub night has helped me through my grief.” The 9th annual event will take place on July 19, 2025.

Through it all, Celia is proud of the love and support that surrounds her. “Frankie still lives on in our memories, and to be able to honour him with The Frankie G Pub Night, where so many people come together to show their love and support, means more than words can say,” she says. “My family and friends have helped me through many years of heartache and sadness, and having their love and support means more to me than anything.”

Her message to the MitoCommunity? “Keep sharing stories of your loved ones. They will never be forgotten.”

Celia’s story is heartbreaking and inspiring. We’re grateful to have her as such an integral part of our MitoCommunity.

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To learn more about Frankie G Pub Night, taking place on Saturday, July 19th, at The Golden Parrots Pub, click below: