News

TORONTO (October 16, 2017) — Cystic Fibrosis Canada’s (CF Canada) Board of Directors has announced that Jeffrey Beach, Chief Executive Director, and Jennifer Nebesky, Chief Marketing and Communications Officer, will lead the organization as Co-Interim Chief Executive Officers (CEOs). Their tenure will begin on November 6, 2017 following the departure of current CEO Norma Beauchamp. Jeffrey will oversee the regional activities of both staff and volunteers, and Jennifer will oversee the teams at the national office.

September 12, 2017 (Toronto) – It’s back to school season and thanks to a new educational resource from St. Michael’s Hospital, anyone can now easily upgrade their knowledge of cystic fibrosis (CF) to better help their patients, clients or loved ones.

TORONTO (August 24, 2017) — Cystic Fibrosis Canada’s (CF Canada) Board of Directors has announced the resignation of Chief Executive Officer (CEO) Norma Beauchamp. Norma’s last day with the organization will be November 3, 2017.

“Norma has been a tireless advocate and leader for the cystic fibrosis community and for the work our organization does to support those living with CF,” said Mitch LePage, Chairman of the CF Canada Board of Directors. “The Board is grateful for her dedication and effort that has helped Cystic Fibrosis Canada make continued progress, and we are excited to see what this next chapter brings for all of us working to end CF.”

Cystic Fibrosis Canada is excited to hear that data from early stage clinical trials led by Vertex Pharmaceuticals Inc. resulted in significantly improved lung function in people with one F508del mutation and one minimal function mutation (F508del/Min).

The triple combination therapy uses a combination of ivacaftor (known as Kalydeco), Vertex’s new product tezacaftor, and a third compound to tackle the mutation of the CF gene, which is the underlying cause of cystic fibrosis (CF). This is the first data to demonstrate the potential to treat the underlying cause of CF in people with F508del/Min mutations, a severe and difficult-to-treat type of the disease.

June 8, 2017 (Quebec) – CF Canada is overjoyed with today's announcement by Quebec’s Ministry of Health and Social Services that a screening program for CF in newborns will finally be implemented.

June 2, 2017 (Montréal, QC) ― As Cystic Fibrosis Awareness Month comes to an end, Cystic Fibrosis Canada is extremely disappointed to learn that those living with cystic fibrosis (CF) in Québec will not have access to lumacaftor/ivacaftor (ORKAMBI^™) – a life-changing medication – through the list of medications reimbursed by the Régie d’assurance maladie du Québec (RAMQ), because of the recent recommendation issued by the Institut national d’excellence en santé et en services sociaux (INESSS).

May is cystic fibrosis (CF) Awareness Month, and Cystic Fibrosis Canada (CF Canada) is launching a campaign to ensure Canadians are aware of the significant challenges around access to drugs many with CF are currently facing. As research breakthroughs and new drugs that can vastly improve the quality and length of life for people with CF become available, it is essential those who can benefit gain access to these advances in health care.

Health Canada’s approval of ORKAMBI^TM for children with cystic fibrosis (CF) aged 6 to 11 years means that they could stand a better chance at living a longer, healthier life. Approximately 267 Canadian children with CF could benefit from access to this breakthrough treatment.

Cystic Fibrosis Canada is extremely disappointed that people with cystic fibrosis (CF) in British Columbia will not be able to access lumacaftor/ivacaftor (ORKAMBI™) - a potentially life-changing drug - through the BC Pharmacare program, due to a recent decision to “close the books” on ORKAMBI™.

Cystic Fibrosis Canada is disappointed that people with cystic fibrosis (CF) in Canada are going to have wait even longer to gain access to ORKAMBI™, a potentially life-changing drug.