The Caring@Home blog welcomes this guest post by Bobbi Greenberg of the ALS Society of Canada.
Last week I had the pleasure of having Bobbi and ALS Society board member Felicia Valo on the Here’s to Your Health radio show. They educated The Haze FM listeners about ALS and awareness and fundraising activities during the month of June. Felicia shared her personal experience and journey with her husband Sidney who suffered with ALS for three years, and how she’s carrying on his legacy with her own dedication to the society. It’s humbling to meet people who are so passionate and make a difference in the lives and futures of complete strangers.
The ALS Society of Canada was founded in 1977 and is the only national voluntary health organization dedicated solely to the fight against ALS, and in support of those living with ALS. 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. Amyotrophic Lateral Sclerosis, the muscle-wasting disease that got its recognition from the famous baseball player Lou Gehrig, strikes men, women and children with no rhyme or reason.
Every June, the society and those touched with ALS rally to increase awareness of ALS across the country, to raise funds and to don the blue cornflower – the national emblem of ALS in Canada.
The blue cornflower represents ALS best because, despite its fragile appearance, it’s a hardy wildflower found throughout the country. Like the cornflower, people living with ALS show remarkable strength in coping with a devastating disease, all the while knowing they’ll most likely lose their battle. The ALS Society of Canada’s mission is to put valuable dollars towards research to discover why one develops ALS, how to detect it early, treat it effectively and ultimately eradicate it completely.
Many amazing people are fighting for better compassionate care benefits for family caregivers, like Kinga Njilas, an inspirational young woman who created the soccer tournament Cup 4 a Cure in honour of her mother Erika, and Felicia Valo whose husband’s journey with ALS put her at the forefront of ALS advocacy.
There are many people out there who are making a difference by working to combat ALS. Anyone can help through the many campaigns including 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 providing quality care for people living with ALS. This fatal disease – with no effective treatment and no cure – affects 2,500-3,000 Canadians with almost all of them dying within three to five years, a horrendous outcome.
Earlier this week, the ALS Society of Canada visited representatives on Parliament Hill to advocate for improved quality of life for people living with ALS and their family caregivers. June 4 and 5 will go down in history to become an annual event – a vigil and a rallying point for those who’ve lost their fight and those who still have fight in them. ALS Canada believes it’s important to advocate on behalf of ALS families in the wake of this devastating disease.
Although the number of people afflicted with ALS is low, it’s the high rate of death that sets it apart from other diseases. To learn more about ALS, please visit www.als.ca. To find out how you can become involved, visit www.walkforals.ca.
Bobbi Greenberg is the Director of Communication, ALS Society of Canada. The society funds research towards a cure for ALS and supports provincial partners in the provision of quality care for those living with ALS. For more information, please contact Bobbi at bg@als.ca or call 1-800-267-4257 ext. 208.
