Activities Abound for Global Mitochondrial Disease Awareness Week, Sept. 15-21
From walks and runs, to discussions and illuminated landmarks, a myriad of activities are on tap around the world for Global Mitochondrial Disease Awareness Week, slated for Sept. 15 to 21.
Largely coordinated by International Mito Patients (IMP), a network of national patient organizations involved in mitochondrial diseases (mito), the third week in September is set aside annually to heighten visibility of the complex group of disorders. Mitochondrial diseases primarily affect the brain, heart, liver, skeletal muscles, and kidney, but also target the endocrine and respiratory systems. It’s estimated that 1 in 5,000 people have a type of mito disorder.
One major IMP effort is Light Up for Mito, a campaign involving the illumination of landmarks in green — the official mito color — to raise disease awareness and spark conversation. Come Sept. 14, more than 90 landmarks, including Leeds Castle in Broomfield, England, and the Old Courthouse Heritage Museum in Inverness, Florida, will be verdantly awash. So far, other participating countries include Spain, Austria, Northern Ireland, Australia and Italy. Landmark visitors are asked to take photos and share them on social media, using the hashtag #lightupformito.
In a related move, supporters worldwide are asked to replace their standard porch light with a green light bulb, and share those photos on social media as well.
In other efforts, mito patients and their supporters around the U.K. will “Take a Stand Against Mito” by setting up awareness stands in local communities. For its part, the United Mitochondrial Disease Foundation is organizing a series of Energy for Life Walkathons across the U.S. In Boston, on Sept. 15, the non-profit MitoAction is hosting an Energy Walk & 5K.
Information days and events will be held in Canada, the Netherlands, Sweden, Italy and Australia — where there also will be a Sept. 15 Stay in Bed Day fundraiser. In France, Mito patients are asked to make videos describing how they’ve overcome challenges. In Rome, on Sept. 20, there will be a discussion titled “Mitochondrial diseases in children, a puzzle in search of a solution.”
For disease researchers, a mitochondria symposium, “From Bench to Bedside,” will be presented Sept. 20 in Nijmegen, the Netherlands. That will be followed the next day by a presentation for parents of children with mito.
The non-profit MitoCanada Foundation is presenting a WalknRoll 4 Mito fundraiser on Sept. 14 in Mississauga, Ontario. The following day, the foundation will host a talk in Calgary titled “The mitochondrial disease journey and the road ahead,” which also will be streamed on Facebook. Go here to register.
Also on Sept. 15 will be the second annual Mito Ride Ottawa, an Ontario bike ride aimed at raising funds and disease awareness. On Sept. 22, the family-friendly 5K fundraiser Winnipeg Mito Walk-Run-Roll takes place.
For participants globally, the IMP offers resources that include a Facebook profile photo frame, Mito Fast Facts, and a downloadable Awareness Week logo. For more information on international efforts, or to register an event, visit this site or this Facebook page.
“There are many exciting and informative activities organised around the world,” the IMP says on its Awareness Week website. “Each of these activities plays a vital role in raising awareness.”