Strategic Directions
2012 – 2015
BREAT H I NG L IFE INTO THE FUTURE
®Cystic Fibrosis
Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. There is no cure.
Cystic fibrosis is a multi-system disease, primarily affecting the lungs and digestive system.
In the lungs, where the effects of the disease are most devastating, a build-up of thick mucus causes increasingly severe respiratory problems. It may be diffcult to clear bacteria from the lungs, leading to cycles of infection and inflammation, which damage delicate lung tissue.
Mucus and protein also build up in the digestive tract, making it diffcult to digest and absorb nutrients from food. arge uantities of digestive enzymes (average of 20 pills a day) must be consumed with every meal and snack. As improved therapies have helped to address the malnutrition issues, virtually all cystic fibrosis-related deaths are due to lung disease.
There are around 4,000 children and adults living with cystic fibrosis in Canada – nearly 60 percent of whom are adults. The median age of survival for Canadians with cystic fibrosis is currently estimated to be 48.5 years of age, and of the 45 patients who died in 2011, half were under 34 years old.
Cystic Fibrosis Canada
Cystic Fibrosis Canada, formerly the Canadian Cystic Fibrosis Foundation, was founded over 50 years ago and is Canada’s only charitable, not-for-profit corporation dedicated to the fight against cystic fibrosis. Cystic Fibrosis Canada invests more funding in cystic fibrosis research and care than any other non-government organization in Canada – a total of nearly $150 million to date.
In 1989, one of Canada’s best known geneticists, Dr. ap-Chee Tsui, discovered the gene for cystic fibrosis in Toronto. Cystic Fibrosis Canada is proud to have helped fund Dr. Tsui’s research at the Hospital for Sick Children that led to this discovery. Since then, research projects funded by Cystic Fibrosis Canada continue to make a positive impact on the lives of CF patients in Canada and around the world.
As a volunteer-based, patient-focused not-for-profit corporation, Cystic Fibrosis Canada relies on the dedicated efforts of the thousands of volunteers across Canada. Investments in research, clinical care and advocacy have been made possible due to the generous contributions of our donors and the hard work of volunteers in our Chapters, at Kin Canada and the thousands of students who participate in Shinerama every year.
Our Mission
Cystic Fibrosis Canada’s mission is to help people with cystic fibrosis. We fund research towards the goal of a cure or control for cystic fibrosis, support high uality CF care, promote public awareness of cystic fibrosis, and raise and allocate funds for these purposes.
Our Vision
A world where cystic fibrosis is no longer a progressive, life-shortening disease.
Photo Credit : Cystic Fibrosis Canada
Our strategic directions provide a roadmap for Cystic Fibrosis Canada as we continue to deliver on our mission and in achieving our vision, and form the basis of our corporate goals, objectives and priorities for 2012 to 2015. Together, we have set our sights squarely on finding a cure.
Maureen Adamson President & CEO
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Strategic Direction Build and achieve sustainable revenue
growth in order to invest in research, care and advocacy
Strategic Direction Influence health policy and government decision-making in order
to enhance the uality of life for CF patients
Strategic Direction Support excellence in CF care in order to ensure patients receive
improved uality of CF care
Strategic Direction Support and enable
advances in CF research in order to
achieve the goal of a cure or control for
cystic fibrosis
Strategic Direction Bridge the gap between research and
clinical care through knowledge translation in order to improve the
health of CF patients
Strategic Direction Align our organizational resources in order
to deliver on our mission
Strategic Directions
2012 – 2015
Strategic Direction #1
Build and achieve sustainable revenue growth in order to invest in research, care and advocacy
Whether you are major donor, Shinerama participant, or grassroots volunteer the question remains the same: How does my support make a difference? Cystic Fibrosis Canada has always worked hard to ensure any donation, regardless of size, is met with a promise to build
a stronger foundation for the future.
— Jim Mountain, Board of Directors, Cystic Fibrosis Canada
Our National Partner, Kin Canada, presents us with a cheque at the 2012 National Kin Canada Convention.
• aunching a major gifts program across Canada
• everaging the strengths of volunteers in major gifts fundraising
• Ensuring donors and volunteers are recognized
• Building and growing Great Strides WalkTM and Shinerama
• Developing a planned giving strategy
• Securing corporate sponsorships and building strategic partnerships
• Directing donor funds to key initiatives in advocacy, research and care
Photo Credit : Cystic Fibrosis Canada
Strategic Direction #2
Influence health policy and government decision-making in order to enhance the quality of life for CF patients
Early diagnosis of cystic fibrosis greatly impacts the quality of life of affected individuals. Screening newborns for cystic fibrosis would have an incredible impact on both the day-to-day lives of patients and the costs associated with their care.
— Keith Bain, Member of the Legislative Assembly (Victoria-The Lakes), Nova Scotia
• Advocating for e uitable and affordable access to medicines and treatments
• Advocating for the inclusion of cystic fibrosis in every provincial newborn screening program
• Increasing awareness of cystic fibrosis and Cystic Fibrosis Canada among governments and legislators
• Empowering volunteer advocates in championing for improved access to CF care in local communities
• Engaging in the public policy dialogue at the national and provincial levels
Photo Credit : Photo courtesy of Katie Schulz
Sophia,
1 day old
When the Canadian Cystic Fibrosis Nurses Interest Group teamed up with Cystic Fibrosis Canada to form the Nursing Advisory Group, we were thrilled. We have seen the course Cystic Fibrosis Canada is charting towards the eventual eradication of this disease, and it was the perfect opportunity to pool our collective experience and
expertise for a common goal.
— Ena Gaudet, Chair, Nursing Advisory Group
Strategic Direction #3
Support excellence in CF care in order to ensure patients receive improved quality of CF care
• aunching a national Quality Improvement Initiative for CF care
• Building on existing best practices, tools and resources, work towards the development of national standards for CF care
• Facilitating the sharing of best practices and knowledge exchange among CF clinicians
• Enabling and supporting innovation in CF care
• Increasing CF patient and family engagement within the health system
• Enhancing the operational performance and infrastructure of the national CF Registry
Photo Credit : Cystic Fibrosis Canada
Ashlee Voortman-Macdonald with
Dr. Hartmut Grasemann at the Hospital
for Sick Children in Toronto
The support from Cystic Fibrosis Canada has been instrumental in sustaining the leadership position of the Toronto Lung Transplant Program and for the many breakthroughs in lung transplantation that have emanated from our team. These achievements include important basic science discoveries that have been translated to advances in clinical care to save the lives of patients with cystic fibrosis.
— Dr. Shaf Keshavjee, Surgeon-in-Chief, University Health Network (Toronto, Ontario)
Strategic Direction #4
Support and enable advances in CF research in order to achieve the goal of a cure or control for cystic fibrosis
• Continuing to invest in research that benefits CF patients
• Investing in targeted CF research through special initiatives
• Improving the research grants and awards administration process
• Building capacity, retaining expertise and providing training support for CF researchers
Technician Trevor Hird mixes cultures in the lab of Dr. David Speert (University of British Columbia)
Photo Credit : BC Children’s Hospital and BC Women’s Hospital, Media Production & Services
By partnering with industry-leading organizations like Cystic Fibrosis Canada, we can help to ensure that advancements made through research will lead to improved health and therapies for cystic fibrosis patients – in Canada and throughout the world.
— Dr. Jean Rouleau, Scientific Director, CIHR Institute of Circulatory and Respiratory Health
Photo Credit : Cystic Fibrosis Canada
Strategic Direction #5
Bridge the gap between research and clinical care through knowledge translation in order to improve the health of CF patients
• Generating discussions that encourage the translation of knowledge gained from the research laboratory to the development of new therapies
• Identifying investment opportunities in projects that lead to better outcomes for CF patients
• Accelerating promising research ideas into innovative therapies through the CF Technology Initiative (CFTI)
There are exciting things happening for Cystic Fibrosis Canada chapters across the country. Our hundreds of grassroots volunteers have always been the reason for our success in the last half century, and they’re more energized today than any other time in our history.
— Donna Summerhayes, founder, Cystic Fibrosis Canada
Strategic Direction #6
Align our organizational resources in order to deliver on our mission
• Stabilizing our finances by eliminating the deficit and achieving a balanced budget
• Improving fundraising effciency
• Restructuring the field governance and staffng structure in order to achieve effciency and foster a donor-centred fundraising culture.
• Recruiting, retaining, engaging, enabling and recognizing volunteers
• Investing in employee learning & development
Photo Credit : Matt Smart
A GearUp4CF volunteer
in Vancouver
2221 Yonge Street, Suite 601 • Toronto, ON • M4S 2B4 2013-01 | Cette publication est aussi disponible en français.
Charitable registration: 10684 5100 RR0001 For more information and to donate, please visit
www.cysticfibrosis.ca
