Rare Disease Day – February 29th is the rarest day on the calendar

This last day in February is used to mark Rare Disease Day, a day to raise awareness about many different rare diseases affecting Canadians. About one in 7,000 Canadians live with a rare disease. Dr. Aneal Khan shares more about the need for industry and clinicians to work together to reduce the cost of drug development to bring solutions to patients and improve their quality of life.

MitoSpin 2024 – Canadians are Spinning Across Canada to Raise Funds and Awareness for MitoCanada | Global News Calgary

Canadians united to support MitoCanada’s annual fundraising event, MitoSpin. This all-day spinning event had participants pedalling, either virtually or in person, at the MNP Community and Sport Centre, all to raise funds and awareness about mitochondrial disease. Check out Global News Calgary’s coverage of the in-person event.

MitoSpin 2024 – A Cross-Country Challenge to Raise Funds and Awareness for MitoCanada | CTV News Calgary

From across Canada, people participated virtually and in-person, at the MNP Community and Sport Centre, in an all-day spinning event to raise money and awareness for mitochondrial disease which impacts one in every 4,000 Canadians. Check out CTV Calgary’s coverage of the in-person event.

Host Maureen McGrath of the Sunday Night Health Show interviews, Hazel Currie.

A MitoCanada ambassador from British Columbia, Hazel shares what life is like living with MNGIE, an ultra rare mitochondrial disease.
Hazel shares her journey to a diagnosis, the ups and downs of symptoms and treatments and equates life with a mitochondrial disease to that of massive power outages that require rest and recovery time and good nutrition.

Host Maureen McGrath of the Sunday Night Health Show interviews, Hazel Currie.

A MitoCanada ambassador from British Columbia, Hazel shares what life is like living with MNGIE, an ultra rare mitochondrial disease.
Hazel shares her journey to a diagnosis, the ups and downs of symptoms and treatments and equates life with a mitochondrial disease to that of massive power outages that require rest and recovery time and good nutrition.

CHQR’s “Mornings with Sue and Andy” featuring Dr. Tarnopolsky (February 28)

Dr Mark Tarnopolsky takes to the airwaves this Rare Disease Day (February 28) to raise awareness about mitochondrial disease and dysfunction, the work MitoCanada is doing, and provides listeners with some helpful tips to promote good mitochondrial health. Take a listen:

Mitochondrial disease: What it feels like

Jodi Young, one of our 2022 MitoScholars, spoke to Healthing about growing up watching her mom battle mitochondrial disease. “Jodi Young wasn’t yet ten when her mom started having seizures. It took a year of testing and trips to the hospital before they received diagnosis that would impact the entire family: mitochondrial disease. Since the genetic condition is passed to children from the mother, that meant Jodi and her sister had the condition as well.” Read more about Jodi’s story.

The Leadership Standard Podcast – Blaine Penny and MitoCanada

In this leadership podcast, MitoCanada Board Director, Blaine Penny, shares his involvement in rare disease advocacy, motivation in establishing our Foundation and fulfilling a vision to build a supportive and united mito community. Blaine shares how he harnessed his love of running to raise awareness of MitoCanada’s efforts and in earning numerous Guinness World Records has raised funds and amplified MitoCanada’s voice across our country and beyond.

MitoCanada Leadership

Listen to the inspiring words of our new leadership team, Kate Murray and Catherine Mulvale, who sat down with MitoAction for an honest discussion about the courage of the MitoCommunity, the challenges of getting a diagnosis and care, the many unmet needs that must be addressed to improve quality of life, and the hope that fuels our future.

MitoCanada Announces New Leadership

The MitoCanada Foundation (MitoCanada) Board of Directors is pleased to announce Kate Murray as Chief Executive Officer (CEO) and Catherine Mulvale as Chief Development Officer (CDO).

Being Healthy is a Privilege Article

From the Toronto Star’s Patient Access and Empowerment Campaign on MitoWarriors Amelia and Cole.

Chasing Tomorrow Podcast

Co-founder and board of director Blaine Penny shares his passion for the outdoors and his determination and drive to support mitochondrial disease research, support and awareness.

MitoCanada team celebrates 10 years with Everesting run

To celebrate the 10th anniversary of MitoCanada, TEAMmito ran up and down a 380m hill 150 times to reach 8,848m, the total elevation of Mount Everest.

Mitochondrial disease does not just affect the patient the entire family has to find their way through the journey

Jon Paradowski and Jayda Back were on CTV Morning Live in Regina to discuss mitochondrial disease, and the Faces of Mito project.

Charity marathons look to new fundraising routes amid pandemic

MitoCanada is featured in the Scotiabank blog on how charities are having to pivot and get even more creative as they raise funds for their cause.

Linking 112 runners together to run a marathon is tricky

Blaine Penny, CEO of MitoCanada, appeared on CBC Radio One’s Eyeopener radio show to discuss MitoCanada’s 13 Guinness World Records, and how we use this novel approach to raise awareness for mitochondrial disease and funds to support transformational research, including tying 112 runners together to claim the title of Most Linked Runners to Complete a Half Marathon.

Canadians look to raise the most money ever while running a marathon

Six Canadians are looking to raise the most money ever raised while running a marathon. On Sunday, May 31 at 8 a.m. MDT, the runners will broadcast the Guinness World Record attempt live on Facebook and YouTube as part of the virtual Calgary Marathon Charity Challenge to raise awareness and funds for mitochondrial disease.

The pandemic has interrupted world record attempts—and spawned new ones

Macleans article featuring Melissa Anne Paauwe and Reinier Paauwe about Guinness World Records being impacted by COVID. Mel and Ren were planning a Guinness World Record for a 3-legged half marathon attempt in support of MitoCanada at the Calgary Marathon, but have postponed the attempt to 2021. However, the show goes on! In lieu of the Calgary marathon being canceled, TEAMmito has come up with a new virtual Guinness World Record being attempted on May 31 for “The Most money raised whilst running a marathon distance”.

Why Give the Gift Horse?

In an article that highlights the benefits of corporate philanthropy, MitoCanada’s fall 2018 partnership with Tool Shed Brewing Company is featured.

Blaine Penny, CEO of MitoCanada

Shares the heartfelt story of his son’s diagnosis with mitochondrial disease which completely changed the trajectory of not only his life but of his family’s too. That change led to co-founding Mito Canada, a not-for-profit focused on raising awareness on mitochondrial disease.

MitoCanada’s TEAMmito

is putting on the family-friendly fundraising event. Gisèle Hansen is encouraging community members to show their support for the first Winnipeg Walk-Run-Roll event on Sept. 22.

Saskatoon parents frustrated their son’s medication could cost $1,000 per month

Patrick and Leanne Wilson discuss the financial stress caused by the cost of medication for their son Tanner, who has Leigh’s Disease. The drugs prescribed for their son are currently not covered by the Saskatchewan Ministry of Health.

Let’s Meet for Beer Podcast: Blaine Penny on MitoCanada

MitoCanada CEO, Blaine Penny, discusses mitochondrial disease, MitoCanada, and the foundation’s five year goals.

CASTANET | BIKING FOR A CURE

Meet the incredible woman behind MitoCanada’s spin series in Penticton, Linda Pilon. Linda has organized this event in honour of her son Scott, who sadly passed away from mitochondrial disease at the tender age of 12 yrs.

CTV | Completing the Scotiabank Toronto Waterfront Marathon in a Battery Costume

Calgary father keeps finding world record setting ways to bring attention to his son’s rare disease. His latest way is completing a marathon in a rare unconventional costume.

Canadian Running Magazine | Thirteen Guinness Records Fall at the Scotiabank Toronto Waterfront Marathon

Penny was running to raise awareness and funds for mitochondrial disease. He and his wife, along with some other affected families, started MitoCanada nine years ago, not long after his son Evan, who is now 14, was diagnosed with the condition, which has left him a quadriplegic and non-verbal.

MitoCanada sets a new unofficial Guinness World Record title at the Calgary (virtual) Marathon and raises $73,000 in 6 hours!

After the physical Calgary Marathon was cancelled and went virtual, MitoCanada worked with Guinness to establish a new record title that could be completed virtually. A group of six Calgary-based runners competed for a new Guinness World Record for ‘The most money raised whilst running a marathon distance’ yesterday on May 31, 2020.