Victoria will join a nationwide movement by adding a touch of red to its skyline for World Duchenne Awareness Day on Saturday night (Sept. 7).
As part of the Shine a Light campaign, Victoria's Parliament Buildings will be adorned in red lights to raise awareness of Duchenne muscular dystrophy (DMD), one of the most severe forms of the disease, affecting over 800 boys and young men across Canada.
The day is an opportunity to promote education, advocacy, and social inclusion initiatives to improve the quality of life for people living with the condition.
The rarity of the disease often leads to a maze of misdiagnoses, impacting the lives of those affected, explained Defeat Duchenne Canada in a recent release.
"This is why our mission to raise awareness is crucial – for these families, time is muscle," says Lisa McCoy, CEO of Defeat Duchenne Canada. "We are working every day to ensure that each child facing a Duchenne diagnosis has a fighting chance through swift access to cutting-edge treatments and care that can preserve their muscles and extend their lives."
The campaign’s goal is to highlight the “critical” need for accessible treatments and research that could lead to a cure, said the release.
More than 25 monuments and landmarks across Canada will participate in this year’s event.
"Each red light this weekend represents our community's unwavering commitment to those battling Duchenne,” said McCoy. “It's a call for access to treatments, earlier diagnoses, better support and care, and increased funding for research.”
DMD is a genetic disease characterized by progressive muscle degeneration, according to Muscular Dystrophy Canada. Caused by an absence of dystrophin – a protein that supports the integrity of muscle cells – the symptoms are usually detected in early childhood.
Symptom onset can be as early as age three and usually affects the muscles of the hips, pelvis and shoulders, progressing to the skeletal muscles. By the early teens, the heart and respiratory muscles may also be affected. A diagnosis of DMD includes a shortened life expectancy.
The disease primarily affects boys but in rare cases can also affect girls.
Residents of Victoria and beyond are invited to participate in this event taking place at the Victoria Legislature on Saturday, Sept. 7, at 8 p.m.
To learn more about DMD, visit defeatduchenne.ca.
