NEWS RELEASE
RARE DISEASE DAY
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The iconic Niagara sign, located in the heart of Thorold, will glow in blue, pink, and green today to mark Rare Disease Day. This vibrant illumination symbolizes unity and hope for over 300 million people globally affected by rare diseases. The towns join a worldwide initiative to raise awareness and foster support for those living with rare conditions. Residents and visitors are encouraged to witness this powerful display from dusk on Feb. 29 until dawn on March 1, as we stand together in solidarity with the rare disease community.
This significant event is spearheaded by Lauren Pires of Mississauga, who lives with Central Core Disease (CCD), a condition that profoundly impacts her own life. Lauren Pires has been instrumental in organizing this illuminating gesture in Niagara. Her journey with CCD, a rare neuromuscular disorder that reduces her physical strength to about 33 per cent of an average person, has been one of incredible resilience and positivity.
Pires is featured in the Rare Disease Day 2024 campaign. She was just featured on CityNews for bringing this campaign to Mississauga.
Rare Disease Day, observed on the last day of February each year, is a global event dedicated to raising awareness for rare diseases and the everyday challenges faced by those affected and their families. This year, the city of Niagara joins the global community, in partnership with EURORDIS-Rare Diseases Europe and 72 national alliances for rare diseases, to highlight the need for research, treatment, and support for those living with rare conditions.
Lauren's story is particularly poignant as it underscores not just the personal battles of those with rare diseases but also their triumphs and contributions to fostering greater understanding and advocacy. Her achievements include finishing second in North America's Largest Inspirational Speaking Competition Finals to take home the title of Inspirational Speaker of the Year and being the first Canadian recipient of the “But You LOOK Good” Inspiration Award from the Invisible Disabilities Association.
The lighting of the Niagara Sign in the colours of Rare Disease Day symbolizes unity, hope, and the collective effort to support those living with rare diseases. It is a call to action for increased awareness, research, and advocacy to improve the lives of millions.
Lauren Pires, alongside community leaders and the rare disease community, invites Niagara residents and the broader public to witness this powerful display. It serves as a reminder of the strength found in adversity and the importance of community support in the journey towards greater awareness and understanding of rare diseases.
- Date: Feb. 29
- Time: From dusk on Feb. 29 until dawn on March 1
- Location: Niagara Sign
For more information on Rare Disease Day and how you can support the rare disease community, please visit EURORDIS-Rare Diseases Europe website and follow the #RareDiseaseDay hashtag on social media.
About Lauren Pires
Lauren Pires is an award-winning inspirational speaker, Invisible Disabilities Association Ambassador, and PR & Media Lead for a nonprofit arts organization. Born with Central Core Disease, a rare neuromuscular disorder, Lauren has about 33% the strength of the average person but is known for her enthusiasm, yay-saying, and 100 per cent spirit.
With over a decade in the nonprofit arts and events industry with #BollywoodMonster Mashup, a multi-day South Asian arts festival, Lauren has been instrumental in amplifying diverse artists and bringing culturally rich entertainment to the GTA. In October 2023, Lauren became the first Canadian to receive the “But You LOOK Good” Inspiration Award from the Invisible Disabilities Association. In November 2023, Lauren won the title of #2 Inspirational Speaker of the Year at Speaker Slam, North America’s largest inspirational speaking competition.
Lauren’s story and advocacy have been featured on CityNews Toronto, OMNI News, Global News, RareDiseaseDay.org, and InSauga. She continues to raise awareness for invisible disabilities and rare diseases in her personal and professional endeavors.
Landmarks Participating in the #LightUpForRare Campaign
On the occasion of Rare Disease Day, landmarks across seven cities in Ontario will unite in a vibrant display of solidarity and awareness, led by advocate Lauren Pires.
- Mississauga Civic Centre Clock Tower: Lighting up in blue, pink, and green from 8 p.m. on February 29.
- Oakville Town Hall: Shining in blue on February 29.
- Peterborough City Hall: Expected to glow in requested pink, purple, blue, and green on February 29, with final colors to be confirmed.
- Peace Bridge: Illuminated in blue, pink, purple, and green on February 28, starting the awareness campaign a day early.
- Hamilton Sign: Displaying blue, pink, and green on February 29.
- Newmarket Fred A. Lundy Bridge: Bathed in blue from sunset until 11 p.m. on February 29.
- Niagara Sign: Lit in blue, pink, and green on February 29.
These landmarks will be illuminated in various combinations of blue, pink, green, and, where possible, purple, starting on February 28th for the Peace Bridge and continuing on February 29th for the others. This initiative aims to increase visibility and foster a sense of community for those affected by rare diseases, aligning with the campaign's message that Rare Disease Day creates visibility and community by lighting up community landmarks. Pires is on a mission to enroll more cities to join the campaign.
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