“Enjoying the Moment” Takes on a Whole New Meaning for People with Cystic Fibrosis
When living with a rare and fatal disease, simple moments of joy are extra special
TORONTO (December 1, 2020) – Cystic Fibrosis Canada is proud to announce the launch of its fifth annual Year End fundraising campaign, Moments. The campaign features three Canadian families/ individuals who are affected by cystic fibrosis (CF), their hopes for the future and moments that they hold dear. Running until December 31, 2020, the campaign will help to ensure that Cystic Fibrosis Canada’s critical work to lengthen the lifespan and improve the lives of people living with cystic fibrosis can continue. Donations will be matched up to $150,000 until December 31 thanks to two private donors.
As a result of generous donor support over the years, people living with CF are living longer lives and are planning for moments that were once unimaginable, such as going to university, getting married, or watching their children take their first steps. However, we are pushing further so that these special moments and more, are not just hopes, but realities for all Canadians living with CF.
“I recently got engaged and am planning for my wedding while facing ongoing challenges because of CF,” says Hailey Laxer, a 26-year-old Toronto-based woman living with CF. “When I envision the future, I am looking forward to more adventures, trying new activities, taking up new hobbies, celebrating everything and truly living, rather than just existing.”
“I want to see my kids grow up, I want to celebrate more anniversaries with my husband, I want to be able to retire because I’ve had a full and meaningful career,” says Megan Parker, an Alberta-based woman living with CF. “I want to have the honour and privilege of growing older and celebrating more birthdays.”
“The moment I am most looking forward to is when all Canadian CF patients and I get access to the miracle drugs already in the market and those to come,” says William Côté, a Quebec-based man living with CF.“I look forward to the day when I will tell my family and friends that I can stay a while longer with a better quality of life.”
Cystic Fibrosis Canada, like many Canadian charitable organizations, has seen a significant decline in funds raised in 2020 due to impacts of the COVID-19 pandemic. Donations made to the Moments campaign will help Cystic Fibrosis Canada to continue to push further for Canadians living with CF. With the support of donors, Cystic Fibrosis Canada can continue to break through the red tape holding back access to life-changing CF medications, fund research into other innovative therapeutic treatments and help people like Hailey, Megan and William get the information and support they need through every life stage.
This year, Cystic Fibrosis Canada aims to raise $300,000 in donations, including $250,000 in an online campaign. The Moments campaign will be shared on Cystic Fibrosis Canada’s website and social media channels, by email and in the mail. All donations can be made at formoremoments.ca.
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About Cystic Fibrosis
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. There is no cure. Of the Canadians with cystic fibrosis who died in 2018, half were under the age of 33. Cystic fibrosis is a progressive, degenerative multi-system disease that affects mainly the lungs and digestive system. In the lungs, where the effects are most devastating, a build-up of thick mucus causes severe respiratory problems. Mucus and protein also build up in the digestive tract, making it difficult to digest and absorb nutrients from food. In addition to the physical effects of the disease, mental health concerns are emerging; anxiety and depression are common among this population. Double lung transplants are the final option for patients with end-stage disease; most fatalities of people with CF are due to lung disease.
Cystic Fibrosis Canada
Cystic Fibrosis Canada has dramatically changed the cystic fibrosis story. We have advanced research and care that has more than doubled life expectancy. Since being founded by parents in 1960, Cystic Fibrosis Canada has grown into a leading organization with a central role engaging people living with cystic fibrosis, parents and caregivers, volunteers, researchers and healthcare professionals, government and donors. We work together to change lives through treatments, research, information and support. Despite our remarkable progress together, we are not yet done. Not when a child with cystic fibrosis still has only a 50% chance of living to 52. We will keep pushing, keep going further until all people with cystic fibrosis can and do experience everything life has to offer — and enjoy everything life has to offer. Learn more at www.cysticfibrosis.ca.
