Cystic Fibrosis Canada launches Elevate to ensure work is guided by people impacted by disease
TORONTO, September 30, 2021 – Cystic Fibrosis Canada has launched Elevate, an engagement program for people impacted by cystic fibrosis (CF), dedicated to enabling them to share their first-hand experiences and knowledge of the disease. The program will put the perspectives of the Canadian CF community at the forefront of Cystic Fibrosis Canada’s work.
Through the program, members will receive opportunities to provide input on CF Canada’s work through email, as well as invitations to participate in research from other organizations.There is no minimum participation requirement, Elevate members can choose to engage in whichever opportunities are of interest to them. Opportunities could range from online surveys, document reviews, invitations to join a committee, to participating in brainstorms or focus groups.
“We have a history of asking for input from the community, but we felt the time was right to formalize this through the launch of Elevate,” said Jeff Beach, Chief, Corporate Services & Strategic Initiatives, Cystic Fibrosis Canada. "We know that each person’s experience with cystic fibrosis is unique and important; seeking out the input and perspectives of those impacted by this disease will help us to better meet the needs of our community and strengthen our work.”
In addition to playing an integral role in Cystic Fibrosis Canada’s work, members of the program will receive sneak peeks at survey results and regular updates on the work they contribute to.
“I became a member of Elevate because, as a person who lives with cystic fibrosis, it's important to me that I use my experiences and my voice to make a difference on the future of this disease in Canada,” said Megan Parker, Chair of the Adult Cystic Fibrosis Advisory Committee. “Cystic Fibrosis Canada’s Elevate program will unify our voices, ideas and efforts and take an already unstoppable community of people linked by CF and help us go further to improve the quality of life and experiences of living with, or supporting someone living with, this disease."
In early October, the Elevate team will be seeking input from members regarding Cystic Fibrosis Canada’s information and support services.
Cystic Fibrosis Canada would like to thank the Cystic Fibrosis Foundation for its support and guidance in the development of the Elevate program. In addition, Cystic Fibrosis Canada would like to thank the UK Trust, Cystic Fibrosis Canada’s Adult Cystic Fibrosis Advisory Committee, the St. Michael’s Hospital CF Clinic Patient and Family Advisory Board and the several members of the Canadian CF community who gave their time to assist in the planning and testing of the Elevate program.
For more information or to register for the program, visit www.cysticfibrosis.ca/elevate
About cystic fibrosis
Cystic fibrosis is the most common fatal genetic disease affecting 4,344 Canadian children and young adults. There is no cure. Of the Canadians with cystic fibrosis who died in the past three years, half were under the age of 34. 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.
About 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 for the 4,344 Canadian children and adults living with cystic fibrosis through treatments, research, information and support. Despite our remarkable progress together, we are not yet done. Not when half of the Canadians with cystic fibrosis who died in the past three years were under the age of 34. 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 cysticfibrosis.ca.
For more information, please contact:
Nicole Young, Director
Tel: (905) 317-5529
Email: nyoung@cysticfibrosis.ca
