Registration - In-house Organization

Cystic Fibrosis Canada / Fibrose kystique Canada / Kelly Grover, President and Chief Executive Officer

Registration Information

In-house Organization name: Cystic Fibrosis Canada / Fibrose kystique Canada
Previous in-house organization names
Responsible Officer Name: Kelly Grover, President and Chief Executive Officer
Responsible Officer Change History
Initial registration start date: 2010-09-01
Registration status: Active
Registration Number: 939590-266824

Associated Communications

Total Number of Communication Reports: 121

Monthly communication reports in the last 6 months: 0

Version 20 of 31 (2020-05-15 to 2020-08-14)

Registration versions:

Version 20 of 31 (2020-05-15 to 2020-08-14)

Lobbying Information

Subject Matters

Health
Justice and Law Enforcement
Research and Development
Science and Technology
Taxation and Finance

Subject Matter Details

Grant, Contribution or Other Financial Benefit, Policies or Program

In terms of research and development, we lobby for support of cystic fibrosis research initiatives that improve the health and wellness of Canadians living with cystic fibrosis.
In terms of science and technology, we work toward the development of precision and personalized medicines that target the basic defect of cystic fibrosis. We are exploring how the federal government may support these efforts through partnership and funding.
Increased federal investment in health-related research. We worked with the Health Charities Coalition of Canada (HCCC) to draft content for a press release urging the federal government to invest more in basic science in Canada.

Policies or Program

Encouraging the development of a rare disease strategy in Canada (similar to the policies for rare diseases in Europe and the United States).
Improving access to precision medicines for Canadians with cystic fibrosis and other rare diseases.
With respect to disability, we advocate for recognition of and supports for people with episodic disabilities.

Regulation

Advocating to stop the regulatory changes to the Patented Medicines Price Review Board (PMPRB).

Communication Techniques

Written communication
Oral communication
Grass-roots communication

Government Institutions

Canada Revenue Agency (CRA)
Canadian Institutes of Health Research (CIHR)
Finance Canada (FIN)
Health Canada (HC)
House of Commons
Patented Medicine Prices Review Board (PMPRB)
Prime Minister's Office (PMO)
Public Health Agency of Canada (PHAC)
Senate of Canada
Statistics Canada (StatCan)

In-house Organization Details

Description of the organization's activities

Cystic Fibrosis Canada is a health charity that supports cystic fibrosis (CF)-related research and care with the goal of finding a cure or effective control for CF, and educates the public about the disease.

Responsible officer name and position during the period of this registration

Kelly Grover, President and Chief Executive Officer

Organization's membership or classes of membership

Cystic Fibrosis Canada has 50 volunteer chapters across Canada. The majority of our members have a personal connection to cystic fibrosis.

Government funding

End date of the last completed financial year: 2019-12-31

List of Government Funding
Government Institution	Funding Received in Last Financial Year	Funding Expected in Current Financial Year
British Columbia	$100,000.00	Yes
British Columbia Gaming	$50,000.00	Yes
British Columbia Ministry of Health	$80,000.00	Yes

In-house Organization Contact Information

Address:
2323 Yonge Street
Suite 800
Toronto, ON M4P 2C9
Canada

Telephone number: 416-485-9149 Ext. 238

Lobbyists Details

Employees who lobby for the organization

Jeff Beach, Chief, Corporate Services and Strategic Initiatives | No public offices held
Kelly Grover, CEO | No public offices held
Olivier Jérôme, Regional Executive Director | Québec | No public offices held
Shannon Ketelaars, Chief Executive Director | Growth Strategy & Operations Western Canada & The Prairies | No public offices held
Eric Mariglia, Associate, Government Relations and Advocacy | No public offices held
Patricia McLaughlin, Regional Executive Director, Central and Southwestern Ontario | No public offices held
Kim Steele, Director, Government and Community Relations | No public offices held
John Wallenburg, Chief Scientific Officer | No public offices held

Cystic Fibrosis Canada/Fibrose kystique Canada

The following names have been used on or after July 2, 2008

The following names have been used on or after July 2, 2008
Name	From	To
Cystic Fibrosis Canada/Fibrose kystique Canada	2011-03-23	current
Canadian Cystic Fibrosis Foundation/Fondation canadienne de la fibrose kystique	2010-09-01	2011-03-23

Cystic Fibrosis Canada / Fibrose kystique Canada

Responsible Officer History
Responsible Officer Name	From (YYYY-MM-DD)	To (YYYY-MM-DD)
Kelly Grover	2018-06-04	Current
Norma Beauchamp	2016-04-19	2017-11-03
Maureen Adamson	2011-02-01	2014-12-02
Cathleen Morrison	2010-09-01	2011-02-01

Date Modified:: 2025-03-12

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Registration - In-house Organization

Cystic Fibrosis Canada / Fibrose kystique Canada / Kelly Grover, President and Chief Executive Officer

Registration Information

Associated Communications

Version 20 of 31 (2020-05-15 to 2020-08-14)

Version 20 of 31 (2020-05-15 to 2020-08-14)

Subject Matters

Subject Matter Details

Grant, Contribution or Other Financial Benefit, Policies or Program

Policies or Program

Regulation

Communication Techniques

Government Institutions

Description of the organization's activities

Responsible officer name and position during the period of this registration

Organization's membership or classes of membership

Government funding

In-house Organization Contact Information

Employees who lobby for the organization