With February being Rare Disease Month it all leads up to Rare Disease Day on Feb. 29, and this year Newmarket will be getting involved with the Global Chain of Lights for the first time.
The town will be illuminating the Fred A. Lundy Bridge blue to join the global observance of Rare Disease Day.
Started in 2008 by Rare Diseases Europe, Rare Disease Day has now grown to 72 countries in an effort to bring visibility and community to those who live with rare disease or have a loved one affected by it.
The Global Chain of Lights campaign brings communities across the globe together to light up landmarks. Some major landmarks that have been illuminated as part of the campaign in the past include the Empire State Building, the Leaning Tower of Pisa, the CN Tower, and the Eiffel Tower.
Bringing the Global Chain of Lights to Newmarket was led by advocate Lauren Pires, to show the town’s solidarity with over 300 million individuals worldwide facing rare disease.
Pires involvement with Rare Disease Day started when she began speaking about her own experiences with a rare disease as part of her inspirational speaking journey.
She says this path only began for her about a year and a half ago and she never used to tell others about her disease. But recently on her speaking journey, she’s talked about it more and met those who relate to her.
“I never used to talk about it because I was worried others would see me differently,” she said. “It didn’t occur to me until I started sharing it that there’s a lot of people who feel the same.”
She started participating in the Global Chain of Lights because she wanted to be part of something bigger. Pires lives in Mississauga and she decided to request that the clock tower be lit up.
That led her to reach out to more communities about participating and she was able to get multiple approvals. Along with Newmarket and Mississauga, Pires was able to bring the Global Chain of Lights to Oakville, Peterborough, Hamilton, and Niagara.
“For a lot of people with rare diseases, there is no individual organization or foundation related to their specific disease,” said Pires. “But with the umbrella of rare diseases, there’s over 6,000 identified rare diseases and this brings us all together.”
The illuminations across the world aim to foster support and understanding of rare diseases while showing global unity, said Pires, who lives with Central Core Disease.
Pires said it’s a great show of representation to see more communities get involved because a lot of the time those living with a rare disease don’t know anyone else living with the disease.
She doesn’t know anyone else in her community living with Central Core Disease, but when she sees representation for rare diseases, she’s able to find others who can relate to her journey.
“Like being undiagnosed for over 20 years, not having anything to Google to learn more about, not having people to connect with who understand,” Pires said. “So for communities to support Rare Disease Day also provides an opportunity to listen to others stories.”
Pires said that those who want to show support can go to rarediseaseday.org to learn how, as well as request that their community participate in the Global Chain of Lights either this year or next.
The Newmarket community is invited to the illumination event at Fred A. Lundy Bridge on Feb. 29 with the bridge set to be illuminated from sunset until 11 p.m.