MitoCanada

Content Use & Collaboration

Our Commitment to Stewardship

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.

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.

Mermaids for Mito

Make a Splash for Mitochondrial Disease

Join the mermaids of Oak Bay, BC for a friendly plunge to raise awareness and support for mitochondrial disease. The first annual Mermaids for Mito is a community-driven gathering where connection comes first. Whether you dip your toes in the water or simply enjoy the shoreline, everyone is welcome to come! Coffee and snacks will be provided, and an uplifting vibe with music and a bubble machine will keep you energized.

Event Details

📅 Saturday, May 23, 2026

🕚 11:00 AM

📍Beach at McMicking Park, off Radcliffe Lane, Oak Bay

  • Parking is limited, please consider biking or walking if possible
  • If driving: Park on Beach Drive or Newport and follow Hood Lane to Radcliffe Lane to the beach

🎟️ Event is free, donations are encouraged below in support of MitoCanada

👕 Show your support to those living with mitochondrial disease by wearing green. Don’t forget a towel! 

If you cannot join us, support our group by making a donation below! 

Meet Alyson

Meet Louise

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.

Meet Keith

Meet Kailey

Meet CindyLynn

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.

Nutrition and Specific Mito Disorders

As mitochondrial disease represents over 350 different diagnoses, it makes sense that nutrition can play different roles depending on the underlying condition.

In some disorders, nutrition strategies are focused on preventing metabolic crisis; in others, the goal may be to reduce catabolic stress, support muscle health, or complement diagnosis-specific therapies. Broad clinical care standards emphasize individualized planning and avoiding metabolic stressors (like prolonged fasting), with diagnosis-specific guidance helping further shape nutrition approaches.

For FAOD, nutrition is often a central part of disease management. Because the body many not be able to use fats effectively for energy, maintaining a reliable fuel supply (often emphasizing carbohydrates) and avoiding fasting is critical. Clinical and guideline literature repeatedly highlights:

MELAS can involve high metabolic demand and multi-system symptoms (including GI and nutrition challenges), so nutrition strategies often emphasize maintaining energy balance and preventing catabolic stress during illness or poor intake.

Targeted supplementation is sometimes discussed in MELAS, most notably arginine and/or citrulline in relation to stroke-like episodes. The literature includes supportive reports and reviews, but consensus guidance also notes limitations and ongoing debate about strength of evidence and clinical use.

In MELAS, nutrition care often focuses on steady intake, illness-day planning, and discussing targeted therapies (like specific supplements) with a mitochondrial specialist because recommendations vary across clinics and individuals.

When muscle involvement is prominent, nutrition strategies often focus on supporting muscle maintenance and minimizing fatigue by ensuring adequate overall calories and protein, especially if appetite is low or unintentional weight loss is present.

Some research in mitochondrial disease populations (including those with muscle symptoms) suggests that insufficient intake is common, and that higher intakes of macronutrients (including protein) may correspond with better outcomes like muscle strength, lower fatigue, and improved quality of life, though this doesn’t mean “more is always better,” and personalization matters.

For mitochondrial myopathies, nutrition support often prioritizes “enough energy + enough protein,” using practical strategies (small frequent meals, energy-dense additions, smoothies) when fatigue or GI issues make intake difficult.

POLG-related disorders can present very differently from one person to another. Nutrition strategies commonly emphasize preventing catabolic stress (especially during illness or reduced intake) and maintaining consistent energy availability, an approach aligned with broader mitochondrial care standards.

In some POLG-related conditions, seizures can be a major concern, and dietary therapies (such as ketogenic-style approaches) may be considered in specialized contexts (typically for difficult-to-treat refractory epilepsy) under expert supervision, with careful monitoring and individualized risk–benefit discussions.

For POLG, the key nutrition themes are often “avoid catabolic stress, plan for illness, and create individualize dietary approaches with your mito specialist and care team,” especially if seizures or significant GI/nutrition issues are part of the picture.

Because mitochondrial disease includes many different conditions, nutrition approaches are rarely one-size-fits-all. Some disorders rely heavily on nutrition strategies to prevent metabolic crisis, while others focus on maintaining energy balance, supporting muscle health, or managing symptoms. Across many diagnoses, maintaining consistent energy intake and avoiding metabolic stress are key themes. Individualized guidance from a mitochondrial specialist or dietitian is important to determine the best approach.

Go to Top