Kin Canada Calls for CF Newborn Screening in Newfoundland Today

Kin Canada President Penny Lees-Smith: "CF Newborn Screening Saves Lives"

ST. JOHN'S, Aug. 15, 2013 /CNW/ - Hundreds of Kinsmen and Kinettes from communities across Canada gathered at Kin Canada's national annual convention in St. John's today and raised their voices to call for CF newborn screening in Newfoundland.

"After almost 50 years of partnership with Cystic Fibrosis Canada, nobody knows better than Kin Canada the difference that CF research, care and advocacy can make," said Penny Lees-Smith, outgoing President of Kin Canada. "Here today in St. John's, let's raise our voices loudly with Cystic Fibrosis Canada and call on Newfoundland legislators to give children born with cystic fibrosis a healthier start in life through CF newborn screening. CF newborn screening saves lives."

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.

Newfoundland and Labrador is one of the few jurisdictions in Canada - and all of North America - that do not screen newborns for cystic fibrosis. British Columbia, Alberta, Saskatchewan, Manitoba and Ontario all screen for cystic fibrosis and the Nova Scotia government have announced plans to adopt CF newborn screening. Newborn screening for cystic fibrosis is now the standard of care in all 50 States in the U.S., Australia, New Zealand, the U.K. and much of the European Union. Cystic Fibrosis Canada is leading advocacy initiatives to make CF newborn screening a universal standard of care in Canada.

"CF newborn screening can give children, like my son, a better start in life," said John Bennett, Provincial CF Advocate for Newfoundland and Labrador and father of a three-year-old boy with cystic fibrosis. "I will never forget the stress and heartache our family endured as our son grew ill and we waited for a correct diagnosis. Every child born with cystic fibrosis in Canada should have a chance to be as healthy as possible from the start, no matter where they live."

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 www.cysticfibrosis.ca.

Kin Canada
Kin Canada is Cystic Fibrosis Canada's longest-standing partner in the fight against cystic fibrosis. Over the past 49 years, Kin Canada has raised more than $40 million for life sustaining research, care and advocacy. For more information, please visit www.kincanada.ca. 

SOURCE: Cystic Fibrosis Canada

Media Contact: 
Melinda McInnes, Communications Director
Cystic Fibrosis Canada
Tel: [phone] ext. 240
Toll free: 1-800-378-2233 ext. 240
Email: [email protected]