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Cystic Fibrosis Partnership

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Kin Canada’s Partnership with the Canadian Cystic Fibrosis Foundation

From a relationship that began on a barstool in 1963, a 40-year friendship has grown into a committed partnership. Over the years, Kinsmen and Kinettes have devoted their efforts to an incredible assortment of events ranging from Daisy Days to road tolls to barbecues – all to help fight cystic fibrosis.The friendship between Kinsmen and Kinettes and Canadians with CF began out of a conversation between Dr. Douglas Crozier, then director of the CF Clinic at The Hospital for Sick Children, and Kinsmen Bill Skelly. During a chance meeting at a Scarborough pub, Dr. Crozier spoke to Bill about his young CF patients.
This conversation left Bill interested in joining the fight against cystic fibrosis, and Dr. Crozier was invited to speak to the North York Kinsmen Club. Almost immediately, the North York Kinsmen enthusiastically backed the CF cause.

By 1964, District 8 had formally adopted CF as its District Service Project. District 8’s commitment sparked the interest of other Districts, and, before long, involvement spread Canada-wide, throughout the Kin organization. In 1987, the Association of Kinsmen and Kinette Clubs adopted CF as a National Service Project.

Today, Kinsmen and Kinettes remain our loyal friends, continually fundraising for CF research and promoting CF awareness. In 1997, Kin reached a great milestone when total funds raised for CF amounted to $25 million. In 2001, Kin raised more than $1 million to help beat CF, bringing the Kin’s cumulative contribution to the CCFF to more than $30 million! These funds have helped Canadian researchers make major strides in the fight against cystic fibrosis.

The hard work and support of Kinsmen and Kinettes is deeply appreciated by Canadians with CF. Since 1964, Kin and the CCFF have shared in many exciting accomplishments, including the discovery of the gene responsible for CF in 1989. The discovery would not have been possible without the tremendous help of our Kin friends.

When Kinsmen and Kinettes first joined in the fight against CF, children with the disease were not expected to live past the age of four. But today, because of Kin, children and young adults with cystic fibrosis are often living into their 30s and beyond. For almost every year of Kin support, we have earned an extra year of life for a CF child. We could never have come so far, so fast, without the continued support of Kin.

In the past 40 years, Kinsmen and Kinettes across the country have worked tirelessly to help beat CF, contributing more than $32 million towards cystic fibrosis research and treatment. With friends like you, there is definite hope for the future of young Canadians living with cystic fibrosis.

Thank you Kinsmen and Kinettes, for everything that you are doing to help find a cure for cystic fibrosis – we look forward to continuing our work together to find a cure for cystic fibrosis.

 

The Canadian Cystic Fibrosis Foundation

Visit us at www.cysticfibrosis.ca

What is CF?

Cystic fibrosis (CF) is a fatal inherited disease, affecting mainly the lungs and the digestive system. In the lungs, where the effects of the disease are most devastating, CF causes severe breathing problems. In the digestive tract, CF often results in extreme difficulty in digesting and absorbing adequate nutrients from food.

Children and adults with CF must consume a large number of artificial enzymes to help them absorb sufficient nutrition, and must undergo a demanding daily routine of physical therapy designed to keep the lungs free of congestion and infection.

What are the signs and symptoms of cystic fibrosis?

  • constant cough which expels thick mucus;
  • excessive appetite, combined with weight loss;
  • bowel disturbances;
  • skin which tastes salty;
  • repeated or prolonged bouts of pneumonia.

What causes cystic fibrosis?

People are born with cystic fibrosis; it is a genetic disorder. About one in every 25 Canadians is a carrier of the gene responsible for CF. A carrier has only one copy of the gene. A carrier does not have cystic fibrosis, and can never get the disease. In most cases, they are not even aware that they are carriers, because they do not have cystic fibrosis, or any of its symptoms.

When two people who carry the CF gene have a child, there is:

  • a 25% chance that the child will be born with cystic fibrosis;
  • a 50% chance that the child will not have CF, but will be a carrier;
  • a 25% chance that the child will not have CF, and will not be a carrier.

With each pregnancy, the risks are exactly the same. Two carrier parents may have several children with CF or none at all.

How is cystic fibrosis diagnosed?

If a physician suspects CF, he or she will probably suggest a “sweat test”. This simple and painless test measures the amount of salt in the sweat. A high salt level, along with other symptoms, points to the presence of cystic fibrosis. Genetic tests are also being used to diagnose the disease.

How is cystic fibrosis treated?

Treatment programs are tailored to individual needs and depend upon the stage of the disease and which organs are affected. Treatments followed at home generally include:

  • tapping or “clapping” the chest and the back vigorously (percussion) or PEP (positive expiratory pressure) Mask Therapy to help loosen the mucus which clogs the lungs;
  • taking pancreatic enzymes with all meals, to aid digestion;
  • taking nutritional supplements and vitamins to promote good nutrition;
  • taking antibiotics in pill or inhaled form, to ease congestion and protect against and fight lung infection; exercise

How does cystic fibrosis affect daily life?

For persons with CF, life includes a daily routine of therapy and periodic visits to a CF clinic. Otherwise, most individuals with cystic fibrosis lead normal lives, for many years, in terms of education, physical activity, and social relationships. Eventually, however, lung disease places increasing limits on daily life.

Is there a cure for cystic fibrosis?

As yet, there is no known cure for CF, but there is real hope. Since 1960, the Canadian Cystic Fibrosis Foundation has worked to find a cure or control for CF. With developments in research and treatment in Canada, the median age of survival has increased from four years in 1960 to more than 30 years today; a tremendous accomplishment, but not enough.

About the Canadian Cystic Fibrosis Foundation

The Canadian Cystic Fibrosis Foundation (CCFF) is a national, non-profit, voluntary health agency established in 1960, which is lead by volunteers in 52 chapters across Canada.

Mission

The mission of the Canadian Cystic Fibrosis Foundation is to help people with cystic fibrosis. To this end, the Foundation:

  • funds research towards the goal of a cure or control for CF, and supports high quality CF care;
  • promotes public awareness of cystic fibrosis; and
  • raises and allocates funds for these purposes.

About Research

The CCFF is the world’s second-largest non-governmental granting agency in the field of cystic fibrosis research. Since it was established in 1960, the Foundation has developed a strong core research program to search for a cure or control for cystic fibrosis.

Many of the milestones on the road to a cure have been achieved by individuals working at institutions across Canada, with the aid of funding from the CCFF. Canadian researches are viewed as leaders in the global effort to find a cure or control for the disease. Their groundbreaking work has yielded significant advances in recent years, particularly since the 1989 discovery of the CF gene.

About Treatment

Along with a world-class scientific program, state-of-the-art CF care remains a major focus of the Foundation’s work. By providing incentive grants to 37 CF Clinics across the country, and to five lung transplant centres, the Foundation strives to address the most immediate priority shared by every individual with cystic fibrosis – access to specialized, multidisciplinary, team-based service of a very high quality.

The Foundation’s clinical programs have contributed to dramatic improvements in the median age of survival for young Canadians with CF.

The CCFF remains steadfast in its commitment to finding a cure for cystic fibrosis, and is confident that the pace of the journey will be accelerated by the outstanding efforts of a dedicated team of Canadian scientists and physicians.

About Supporters

Funds are raised through the efforts of local CCFF Chapter volunteers, members of Kin Canada, Zellers store employees, college and university Shinerama students, members of Advocis, the TOSHIBA “Breath of Life ®” Celebrity Ski Challenge, CARSTAR Quality Repair Centres, and countless individuals, groups, and corporations. In addition, the Foundation is very fortunate to have the internationally acclaimed singer, Céline Dion, as its Celebrity Patron and Mila Mulroney as its Honorary Director.