May is Cystic Fibrosis Awareness Month

"Raise Your Voice" with Céline Dion for Children with Cystic Fibrosis

PSA Campaign Launched in Quebec Today for CF Newborn Screening 

MONTREAL, May 6, 2013 /CNW/ - Cystic Fibrosis Canada and Fibrose Kystique Quebec launched the "Raise Your Voice" Public Service Announcement (PSA) campaign today in Quebec, featuring Celebrity Patron Céline Dion, to urge Quebec families to call on members of the National Assembly to support newborn screening for cystic fibrosis.

"Newborn screening for cystic fibrosis is critical to begin early, life-saving treatment," says Dion in the PSAs. "Without it, the damage can be irreversible." Ms. Dion has been the Celebrity Patron of Cystic Fibrosis Canada for 31 years. Her own niece, Karine, died from cystic fibrosis at just 16 years old.

Early diagnosis of cystic fibrosis through newborn screening provides identified children with a better start in life. Without CF newborn screening irreversible lung damage, impediments to physical growth, and digestive problems may have already occurred when the child is finally diagnosed. To slow progression of the disease, early intervention is critical. 

"Quebec is now one of the few jurisdictions in the western world where newborn screening for cystic fibrosis is not a universal standard of care," said Benoit Vigneau, Executive Director of Fibrose Kystique Quebec. "We urge Quebec families to call on their Member of the National Assembly to implement CF newborn screening and give babies born with this devastating disease a chance to live longer, healthier lives."

"As a physician and researcher who has spent many years focusing on the cause of this disease and possible treatments, I am encouraged to see the Atlantic Provinces, specifically Nova Scotia, are working towards implementing newborn screening, but discouraged that the same progress isn't being made in Quebec," said Dr. Larry Lands, CF Clinic Director at Montreal Children's Hospital. "If you catch cystic fibrosis early, you are proactively treating a healthy baby, as opposed to reactively treating a sick infant or toddler. Until newborn screening was available, we had to wait for symptoms to present. This means children spend their first few years in and out of hospital while doctors try to find a diagnosis, leaving parents to feel helpless while they wait. A later diagnosis can cause irreversible lung and digestive system damage."

Newborn screening for cystic fibrosis is now the standard of care in the United States, Australia, New Zealand, the United Kingdom and much of the European Union. Currently, British Columbia, Alberta, Saskatchewan, Manitoba and Ontario screen newborns for cystic fibrosis, yet Quebec still does not screen for this disease. The Nova Scotia government recently announced plans to adopt CF newborn screening. 

During the 2012 Provincial Election, Fibrose Kystique Quebec sent a letter to the Party Leaders asking for their commitment to implement CF newborn screening in Quebec. Today, the Quebec Government remains silent on why they have not yet committed to newborn screening for cystic fibrosis. 

Cystic Fibrosis Canada and Fibrose Kystique Quebec are calling on families to send a letter or email to their MNA and to sign our online petition at in support of CF newborn screening. 

Cystic Fibrosis
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. It is a multi-system disease that affects mainly the lungs and the 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. As improved therapies have helped to address the malnutrition issues, ultimately most deaths related to cystic fibrosis are due to lung disease. There is no cure. 

Cystic Fibrosis Canada
Cystic Fibrosis Canada is one of the world's top three charitable organizations committed to finding a cure for cystic fibrosis and is an internationally-recognized leader in funding CF research, innovation, and clinical care. We invest more funding in life-saving CF research and care than any other non-governmental agency in Canada. Since 1960, Cystic Fibrosis Canada has invested almost $150 million in leading research, care and advocacy, resulting in one of the world's highest survival rates for Canadians living with cystic fibrosis. For more information, please visit

NOTE TO MEDIA: To download broadcast-ready PSAs featuring Céline Dion, in French and English, please visit:

SOURCE: Cystic Fibrosis Canada

For further information:

Quebec Media Contact:
Michel Champoux, Directeur
communications et marketing
Fibrose kystique Quebec
Tel : 514.877.6161, poste 232
Email :  

National Media Contact: 
Melinda McInnes, Communications Director
Cystic Fibrosis Canada
Tel: 416-485-9149 ext. 240
Toll free: 1-800-378-2233 ext. 240

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