Why a blue cornflower? The blue cornflower is the ALS Canada emblem because, despite its fragile appearance, it is a hardy wildflower found throughout the country. Like the cornflower, people living with ALS show remarkable strength in coping with a devastating disease. Like the cornflower, awareness of ALS and funding for care and a cure is growing across Canada.
Kinga Njilas is an inspirational young woman who created the soccer tournament “Cup 4 a Cure” in honour of her mother, Erika (this year’s fifth annual tournament will be held on June 10 in Guelph), created a web site detailing her experiences caring for someone living with ALS, created a Facebook page enabling people affected by ALS to lend support to one-another and continuously raises awareness for ALS. Njilas is an example of someone who truly embodies the spirit of awareness month, throughout the year.
Njilas also plays a large role in engaging youth who have parents living with ALS and was instrumental in the development of a national peer-support program. In recognition for her hard work Njilas has received numerous awards and accolades including the June Callwood Award from the Ontario government, the Leader of Tomorrow award from ALS Canada, as well as winning the 2010 Mike and Ike’s Ante Up! contest. Her mother, Erika, was diagnosed with ALS when Njilas was 21 years old. She was Njilas’ inspiration for what keeps her continuously fighting for ALS Canada.
“My mom lost her battle with ALS after a long four-year fight on January 29, 2010. A piece of my heart went with her, but in her memory I will continue to do all I can to raise funds and awareness,” says Njilas. “Until the day when no one suffers the heartache of losing someone they love to ALS, I will continue fighting.”
Other awareness activities include the WALK for ALS -- ALS Canada’s national signature fundraising and public awareness event. Most of the Walks take place in June to coincide with ALS Awareness Month. The Walk is an important source of funding for research into ALS and for the provision of quality care for people living with ALS. In 2011, more than 84 Walks across the country raised more than $3 million.
And, the ALS Society of Canada will be visiting representatives on Parliament Hill on June 4 and 5, advocating for the improvement of the quality of life for people living with ALS and their family caregivers. ALS Canada will be advocating on their behalf, as ALS families often experience financial hardship in the wake of this devastating disease.
ALS, more commonly known as Lou Gehrig’s disease, is a rapidly progressive and fatal neuromuscular disease that causes the degeneration of nerve cells in the brain and spinal cord. As the nerve cells die, people with ALS lose control of their muscles, which makes breathing, eating, and even smiling almost impossible. Eighty per cent of those diagnosed will die within two to five years.
The ALS Society of Canada, founded in 1977, is the only national voluntary health organization dedicated solely to the fight against ALS and support for those living with ALS. The Society funds research towards a cure for ALS and supports our provincial partners in the provision of quality care for those living with ALS.
To find out how you can become involved, please visit www.walkforals.ca.
To find out more about ALS, please visit www.als.ca.
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For more information, please contact:
Director of Communications
ALS Society of Canada
1-800-267-4257 ext: 208