News

TORONTO (June 12, 2018) – Cystic Fibrosis Canada is pleased to announce its national partnership with Canadian based jewelry company, NOGU. Mario and Luca Lavorato, founders of NOGU and both diagnosed with cystic fibrosis (CF) at birth, have pledged to donate 50 percent of gross sales from the company’s Kite Collection to Cystic Fibrosis Canada.

TORONTO  (June 1, 2018) – Cystic Fibrosis Canada’s largest fundraising event, The Walk to Make Cystic Fibrosis History, will go to new heights in 2019 with a trek to Machu Picchu in Peru. The week long journey begins on May 25, 2019 and is organized through Charity Challenge, the world's leading tour operator, running overseas fundraising challenges.

May 2, 2018 (TORONTO) – Cystic Fibrosis Canada (CF Canada) is launching a national campaign this May, Cystic Fibrosis Awareness Month, to call on the government to make life-changing medications accessible for those who need it. Currently, a life-changing medication called Orkambi has the potential to benefit 2,100 of the 4,200 Canadians who live with cystic fibrosis (CF). Unfortunately, without public funding, many people with CF cannot access it despite its approval by Health Canada and doctors prescribing it.

TORONTO (April 24, 2018) — Cystic Fibrosis Canada’s (CF Canada) Board of Directors is pleased  to announce the appointment of Kelly Grover to the position of President and Chief Executive Officer (CEO) effective June 4, 2018.

Cystic Fibrosis Canada (Quebec) calls on government to help protect the health of people living with this fatal disease.

April 23, 2018 (Montreal, QC) – Cystic Fibrosis Canada is urging the Quebec government to take action to protect the health of Quebecers living with cystic fibrosis by granting them access to the life-changing medication Orkambi.  

Toronto, ON (November 14, 2017) – Cystic Fibrosis Canada is extremely disappointed that provincial governments have decided not to negotiate the price of Kalydeco, an effective cystic fibrosis (CF) medication, for Canadians with CF who have specific mutations and could potentially benefit from this drug.  

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.