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President & CEO, Cystic Fibrosis Canada

Company: Cystic Fibrosis Canada
Date Posted: December 22, 2017


We are seeking a new President & CEO to lead Cystic Fibrosis Canada’s strategic direction and, operations. The President & CEO will report to the Board of Directors through the Chair, and will work closely with employees, volunteer leaders and partners to move our organization forward.

The primary focus of the role is the continued implementation of our strategic plan, ONE CFocus 2020, ensuring that the national operational plans and objectives are aligned to the strategic plan for the delivery of programs, revenue generation, communications and advocacy, clinical/scientific initiatives, and research. 

We are at an exciting point in the fight against CF. Global Cystic Fibrosis research has made huge strides in past years, and there are many potentially life-
altering therapies possible in the near horizon. This is changing the landscape for those with Cystic Fibrosis, and their families. The CF Canada community looks forward to welcoming a new President & CEO who is excited about and committed to our mission and vision, and who wants to partner with volunteers, partners, donors and employees to make it a reality.

To view the full Executive Brief, please visit:

Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. More than 4,200 Canadian children, adolescents, and adults with cystic fibrosis attend specialized CF clinics. It is estimated that 1 in every 3,600 children born in Canada has CF.

Cystic Fibrosis causes various effects on the body, but mainly affects the digestive system and lungs. The degree of CF severity differs from person to person, however, the persistence and ongoing infection in the lungs, with destruction of lungs and loss of lung function, will eventually lead to death in the majority of people with CF.

At present, there is no cure but the recent introduction of drugs that, for the first time, address the cause of CF and not just the symptoms, have created hope that an effective control will be available for the majority of persons with CF in the coming years.

Our vision is a world without cystic fibrosis. Cystic Fibrosis Canada (CF Canada) is a national charitable not-for-profit corporation established in 1960. While the organization has regional field employees across Canada, its operational and administrative headquarters is in Toronto.

We help all people living with cystic fibrosis by raising funds to support world-class research without regard to the researcher’s locale. We support high quality individualized CF care in all areas of Canada and we promote public awareness of CF while advocating for access to drugs for all those who need them. 

As an internationally recognized leader in funding innovation and clinical care, CF Canada is one of the world’s top three charitable organizations committed to finding a cure for cystic fibrosis (CF).  Since establishment, thanks to the generosity of our donors and volunteers, Cystic Fibrosis Canada has invested more than $244 million in leading research, innovation and care. As a result, Canadians with cystic fibrosis have one of the highest median survival rates in the world. CF Canada invests more in life-saving CF research and care than any other non-governmental agency in Canada.

Cystic Fibrosis Canada has 50 volunteer Chapters located across the country. We could not do our important work for Canadians living with the devastating impacts of this disease without the support of our dedicated Chapter volunteers and partners like Kin Canada. Chapter members raise funds, promote public awareness for cystic fibrosis in their communities, serve as a local resource to partners, and support Canadians with cystic fibrosis and their families.

Cystic Fibrosis Canada dedicates its efforts in four key areas: Healthcare, Research, Advocacy, and the Canadian CF Registry.

Healthcare – Canada’s 42 accredited CF clinics (paediatric and adult) provide specialized multidisciplinary care for individuals with cystic fibrosis. There are CF clinics in most major cities, all within a hospital setting and many with a university affiliation. CF patients are seen by various healthcare professionals at each clinic visit, and during hospitalization. This multidisciplinary approach, which includes the physician and nurse, along with the dietitian, physiotherapist, social worker, pharmacist, and others, optimizes the care delivered.Cystic Fibrosis Canada provides support to accredited Canadian CF clinics through its Clinic Incentive grant program. These grants help ensure CF clinic personnel are available to the patients and help to ensure clinic personnel have opportunities to continually upgrade their knowledge and skills, and remain up-to-date on advancements in research and care. These grants also assist healthcare personnel with travel to outreach centres so they can provide CF-specific care in distant communities that do not have CF clinics.

Research – Investing in the best research has led to outstanding progress in the fight against cystic fibrosis. A person born with CF today has, statistically, a 50-percent chance to live into their early 50s, compared to their 80s for average Canadians. Nearly 60-percent of all people with cystic fibrosis in Canada are adults. In the 1960s, most children did not live long enough to attend kindergarten.In 2017/2018, Cystic Fibrosis Canada is funding more than $5.1 million in leading-edge research, supporting 49 research projects, 23 fellowship and studentship training awards, two national core facilities, and targeted research programs and partnerships aimed at advancing CF knowledge and achieving excellence in the quality of care for CF patients.

Advocacy – Never has the CF drug pipeline held more promise. New disease modifying drug therapies have demonstrated that cystic fibrosis can be beaten. The challenge is that many of these drugs remain prohibitively expensive. Cystic Fibrosis Canada is therefore committed to ensuring government funding for these medications so that all people living with this disease can have access to these life changing therapies.

Canadian CF Registry – Clinic specific data from the Canadian Cystic Fibrosis (CF) Registry is now available to the public for the first time, demonstrating enhanced focus on leading in quality improvement and excelling in CF care, and ultimately moves us closer to our goal of maintaining effective national standards for CF care and treatment across Canada.Since the majority of CF patients attend CF clinics, the Canadian CF Registry includes data on virtually all Canadians with cystic fibrosis, giving a comprehensive picture of the CF population in this country. The Registry is used both by CF clinicians and researchers to improve their knowledge of disease patterns and care of patients with cystic fibrosis. The data collected within the Registry can be used to better understand clinic populations, respond to emerging health care issues, develop quality improvement initiatives and track clinical outcomes over time. These efforts will ultimately translate into improved outcomes for people with cystic fibrosis.

For additional information on Cystic Fibrosis Canada and our work to improve the lives of Canadians living with cystic fibrosis, and ultimately to find a cure for this devastating disease, please visit

The successful candidate will be excited by the opportunity to join an organization that, with its partners in Canada and beyond, is on the verge of a breakthrough of historic proportions. Recent advances in drug therapy convey a realistic possibility that a control for this disease will be available to the majority of persons with CF in the foreseeable future. Our new President & CEO will need to help drive the organization towards this successful conclusion while recognizing that, for some, the ravages of the disease will be irreversible.

Our new President & CEO will bring a strong understanding of the healthcare system in Canada, and how this affects people with rare diseases like Cystic Fibrosis. Confident and articulate, the new incumbent will communicate passionately about Cystic Fibrosis Canada, and will inspire others to become involved. Given that the new drugs attacking the cause of CF, not just the symptoms, are very expensive, our new leader will need some competence in ensuring direct and capable advocacy with provincial governments and the general public.

Calm, competent, and credible, the ideal candidate will possess strong leadership capabilities and an excellent grasp of business fundamentals. A stabilizer who can steadily move the organization forward on our strategic plan and goals, the President & CEO will coach our employees on the implementation of our strategic plan into tactical operational plans for each unit. In addition to sharing and demonstrating the values of CF Canada, the successful candidate will bring a high-level of emotional intelligence, and will balance empathy with executive competence.

The new incumbent will have a strong grasp of big-picture organizational strategy, and will support the Board in its focus on strategic oversight. Pragmatic and objective, the successful candidate will establish clear priorities, and will be capable of identifying challenges and making tough decisions. The President & CEO will possess a high level of curiosity, and will foster a culture of innovation across the organization.

The ideal candidate will bring a strong understanding of the not-for-profit landscape in Canada, both from healthcare organization and charitable contexts. Deep experience working with volunteers and boards is expected, and ideally candidates will have supported Board volunteers and served as a Board volunteer. The new incumbent will be diplomatic and at ease working with a wide range of people and personalities. Comfortable with multiple perspectives and constructive debate, the successful candidate will guide and focus the Board on how to best deploy its collective passion, skills, and ideas.

Given the organization’s imperative to raise additional funds, the President & CEO will have an ability to lead an organization that can strategically grow revenues, and will be actively involved in seeking funds in partnership with employees and volunteers. The ideal candidate will help to encourage and coach Board and Campaign Cabinet members in becoming effectively involved in identifying donors, opening doors, and stewarding the involvement of donors. Comfort in understanding and explaining scientific research is important, and previous experience in fundraising for research is critical in this role.

Approachable and relatable, the ideal candidate will have exceptional interpersonal skills. The new incumbent will value the volunteer roots of our organization, and will exhibit warmth, compassion, and kindness. An intent listener who connects deeply with people, the President & CEO will respect and appreciate the contributions from volunteers, donors, partners, and employees across the country.

The successful candidate will manage with clarity and consistency, and will help us to attract and retain the right people. A strong delegator who empowers employees and develops leaders, the ideal candidate will provide a clear vision and clear expectations.

Accessible and encouraging, the President & CEO will form strong relationships with senior leaders, support them in achieving mutual goals and provide the coaching and guidance necessary, with a view to future succession planning.
Proven experience as part of a senior leadership team, ideally in a complex national organization, is essential for this role.
Able to think nationally, the successful candidate will understand the breadth of our country, in terms of the diversity and uniqueness of regions, cultures, and languages. Capacity in both of Canada’s official languages is an important asset in this role to ensure the continued engagement of, and strong relationships with Francophones in Quebec and other parts of Canada.
Board and Volunteer Management
- Through ongoing communication and collaboration, facilitate the work of the Board of Directors and Committees to assist them in fulfilling their obligations.
- Develop strategy and implement plans to attract and engage volunteers across the country in line with strategic objectives.

- Provide appropriate leadership to, and effectively interact with, a diverse volunteer community inclusive of board members, donors, students and student leaders, partners like Kin Canada, event committees and national/regional/chapter volunteers.

Organizational Leadership and Strategic Planning

- Work closely with the Board of Directors to develop annual business plans and budgets to meet short and long term strategic directions.
- Oversee the implementation of business plans and execution of national programs and operations.
- Work with volunteers, clients and the senior management team to establish program priorities, partnerships, and strategic alliances in health and consumer-related activities.
- Working with the Research Advisory Council and the Healthcare Advisory Council, guide the review process for the appropriate designation of relevant research initiatives, ensuring that our research initiatives reflect the changing CF science landscape and the issues confronting those with CF in Canada.
- Develop and build efficient organizational structures, program delivery methods and operating practices and evaluate and monitor to ensure their effectiveness.
- Keep abreast of relevant service delivery trends and best practices and engage with sector leaders to remain at the forefront of relevant advances.Ensure policy and program coordination and provide support to the various components of CF Canada including: the Research and Healthcare Advisory Committees, the Adult Cystic Fibrosis Committee, and the CF Canada Regional Offices.

Team Leadership and Human Resources

- Foster a culture of teamwork and accountability throughout the organization.
- Lead, coach and motivate a team of professionals in the execution of high quality work for CF Canada.
- In conjunction with senior HR employees, manage human resource functions through the implementation of relevant practices, systems and procedures across the country;
- ensure adherence to regulatory requirements and seek legal counsel as appropriate.
- Formulate and implement suitable employee development initiatives for professional growth and succession planning, including plans for CEO self-improvement.

Fund Development and Donor Relations

- CF Canada has recently embarked on a national campaign to raise $15 million by the end of 2021 for a world-first program of individualized therapy and for enhanced programs for CF adults encountering new complications. Our new President & CEO will need to help manage the campaign and solicit support for the campaign without allowing other revenue streams to be cannibalized.
- Build and foster strong relationships with key funders and donors, participating in all aspects of the donor cycle in partnership with employees and volunteers.
- Ensure that CFC’s long-running revenue generating programs are supported as appropriate, with fund raising resources allocated against our best opportunities, while remaining mindful of the need to identify and implement new fund raising initiatives.
- Work with the Philanthropy team leadership to ensure best practices and innovations are appropriately implemented, and to sustain and enhance financial support through new and existing funders and partnerships

Communications and Advocacy

- Serve as ambassador and chief spokesperson for Cystic Fibrosis Canada.Maintain a high profile and represent CF Canada in the community through partnerships and active involvement with relevant organizations.
- Promote and maintain effective internal and external communications with stakeholders including, individuals and families impacted by cystic fibrosis, volunteers, Regional Offices, CF Canada partners and the wider community.
- Support Advocacy efforts by keeping abreast of Federal and Provincial policy and proactively influence legislative changes relevant to CF Canada.
- Cultivate strong relationships with government and pharmaceutical companies to advocate and facilitate about new medications.

Financial and Operational Management

In conjunction with the Chief Financial Officer, oversee efficient and effective operations of CF Canada including administrative functions and policy administration.In partnership with the Senior Leadership Team, develop and prepare operating revenue and expense budgets for Board review and approval while protecting CF Canada’s reserve funds.Monitor and report on financial performance and institute remedial action where indicated; ensure processes and controls are in place regarding the handling of funds.Oversee the achievement of financial objectives while maintaining and/or exceeding service delivery benchmarks.Working with the Board of Directors, identify, evaluate and implement measures to mitigate organizational and financial risk.Ensure compliance with policies and standards of CF Canada while delivering on the mission and mandate. 


In conjunction with the senior leadership team, the President & CEO will focus on the following key priorities:

- Ensure a smooth transition of leadership by motivating and further developing a high-performance team.
- Effect an enhancement in culture towards corporate accountability, performance measurement, and client engagement.
- Strengthen relations with all communities – people living with CF and their families, employees, volunteers, partners like Kin Canada, researchers – ensuring alignment in mission while deepening commitment as ambassadors of the cause.
- Develop a coordinated fund development structure, implement strategies to diversify resource development, and significantly increase revenues while building the donor database.
- Ensure the creation and implementation of strategies that strengthen the brand recognition of CF Canada nationally and internationally.
- Refine and implement the revised plan for research funding allocation.
- Create a sense of pride and confidence across the organization through decisive, proactive leadership balanced with appropriate consultation to provide clear strategy and direction.
- Increase advocacy activity to create more visibility with all levels of policy makers. 


About the disease:
Publications (Annual Report, Audited Financials, etc.):
Programs – Healthcare:
Canadian CF Registry:
Patient & Family Resources:
Virtual Education Program for Parents & Caregivers:
Chapter Presidents:
Research & Healthcare Advisory Councils:
Adult Cystic Fibrosis Advisory Council:


KCI (Ketchum Canada Inc.) has been retained to conduct this executive search on behalf of the Board of Directors of Cystic Fibrosis Canada.  For more information about this exciting and inspiring senior leadership opportunity, please contact Tara George, Senior Vice President by email at .

To view the full Executive Brief, please visit:

Interested candidates should submit their resume and a cover letter of interest to the above email address no later than January 31, 2018.   All enquiries and nominations will be kept in strict confidence.