Message from Cystic Fibrosis Canada’s Board Chair and President and CEO

As we mark Cystic Fibrosis Canada's 65th anniversary in 2025, we celebrate the remarkable tale of what's possible when people unite behind a shared goal.

When we were founded in 1960 by CF parents, cystic fibrosis brought a devastating diagnosis: most children did not survive to adulthood.

Today, we have a treatment that has changed many people’s lives: they feel better and have more energy and fewer hospitalizations. In the past year we have successfully pushed for changes that have allowed even more people to access the treatment they need.

We also marked a new survival milestone: half of babies born with CF today will live beyond their 60th birthdays.

But it also means that half won’t.

That’s why our work to rewrite the cystic fibrosis story in Canada is not done. Yet.

In partnership with the CF community, we're fearlessly venturing into a new frontier to ensure our future progress mirrors the transformative change of our first 65 years.

Over the past year we have started to write our next chapter: one where everyone in Canada living with cystic fibrosis can have a full, healthy, and long life – a life without limits.

To this end, we have prepared our clinical trial network to be ready for gene therapy trials. We expanded our work with clinicians and our community to shape the future of cystic fibrosis care. We strengthened our mental health resources and centred the CF community throughout our work - including engaging parents of newly diagnosed children with CF in shaping our work.

Thank you to everyone who supported us last year, who connected with us and contributed in so many ways. We appreciate your trust in us to lead the way with and for the cystic fibrosis community in Canada.

Our next 65 years hold countless untold stories, and we won't rest until we achieve the ending we want. The ending we need.

Barbara M. Hill

Chair, Board of Directors

Kelly Grover

President and CEO

Impact snapshot

Selected 2024-25 highlights, made possible by you

01

About our community

Hope through progress

Many Canadians with cystic fibrosis are living healthier, longer lives. Yet, there is no cure. Some still face an immense daily burden and others can’t benefit from the new treatments we helped bring to this country.

About Canada’s cystic fibrosis community*

4,513

people in Canada are living with cystic fibrosis

people were newly diagnosed with cystic fibrosis last year

of CF diagnoses were made through newborn screening

of people living with cystic fibrosis have at least one copy of the most common gene mutation (F508del) that causes CF

the other 13% are affected by one of the 2,000+ rarer mutations causing CF

half of babies born with cystic fibrosis today are expected to celebrate their 62nd birthdays

*Based on data published in our Canadian Cystic Fibrosis Registry Annual Data Report for 2023, the most recent year for which data are available.

Celebrating 65 years of progress

Our 65^th anniversary is more than a milestone. It’s a celebration of how we’re rewriting the cystic fibrosis story in Canada. And a reminder that there is much more to be done.

Since being founded in 1960 by parents of children with cystic fibrosis, we’ve worked closely with the cystic fibrosis community and our generous supporters to dramatically change the cystic fibrosis story, for the better.

Transformational scientific discovery

Earlier diagnosis

Improved access to life-changing treatment

Better access to life-changing treatments

By improving the function of the defective protein made by the CFTR gene, Trikafta helps to protect the health of CF patients before serious lung damage occurs.

We pushed for Trikafta’s broad availability in Canada and advocated for public drug programs to cover its costs as regulatory approval expanded to more people in our CF community.

In the four years since Trikafta was approved by Health Canada, we have advocated for it to be available to everyone in Canada who can benefit from it. Our work continues, with a focus on affordable access and broader access so people with rarer mutations can see if it works for them.

Timeline of Trikafta access in Canada

People in Canada’s cystic fibrosis community participate in pivotal clinical trials for Trikafta through our clinical trials network.

2018

2021 ages 12+

2022 ages 6+

Health Canada approves Trikafta for people in different age groups with the most common CF mutation, F508del, expanding its availability to more people in our comminity.

2023 ages 2+

Health Canada approves Trikafta for people with some rarer mutations.

2024

Longer lives with cystic fibrosis

Expanded access to clinical trials

Isaiah sits cross-legged in the grass. smiling. — “My participation in the clinical trials … has made me realize the immense, ongoing team effort in the fight against CF in Canada."
Isaiah, living with cystic fibrosis

Greater access to clinical trials

Clinical trials are the key to unlocking new and innovative treatments for Canadians with cystic fibrosis. They test potential new treatments to see if they work better than current ones. For people without access to the modulator therapies, clinical trials are often the only option.

The Cystic Fibrosis Canada Accelerating Clinical trials (CF CanACT) network was created to coordinate cystic fibrosis clinical trials across Canada, making it easier for pharmaceutical companies to bring their drugs to Canada.

As a result, all Canadians living with CF can participate in clinical trials if they meet the necessary criteria. More than 5% of eligible patients have done so, which is a strong participation rate for clinical trials.

2018

Cystic Fibrosis Canada creates CF CanACT, a network of 6 sites, to coordinate CF clinical trials across Canada.

The network grows to 10 sites that together provide care to 61% of Canada’s CF population. Anyone with CF can be referred to a trial site.

2020

2023

The network has coordinated 50+ clinical trials since its creation.

The network launches two different gene therapy clinical trials for adults with rare mutations. The trials are offered across three sites, with more expected.

2024

Better care, closer to home

A stronger clinical community

Training more CF specialists

We’re building a stronger clinical community through fellowships that support Canadian doctors to become cystic fibrosis specialists. Since 2005, we’ve supported more than 29 fellowships, with a 95% success rate of physicians staying in Canada after their training. Most become cystic fibrosis clinic directors, ensuring better care for Canadians living with cystic fibrosis.

physicians supported to become cystic fibrosis specialists since 2005

95%

stay in Canada after their training

Dr. Bradley Quon was awarded a Cystic Fibrosis Canada clinical fellowship award 15 years ago. Dr. Quon has stayed in CF research and care, spending five years as Medical Lead of our clinical trial network and has gone on to become Director at the St. Paul’s Hospital cystic fibrosis clinic in Vancouver, this while maintaining a robust portfolio of CF related research projects.

03

Writing our next chapter

Our work is not done

While we celebrate the positive transformation that some people in our community have experienced over the past 65 years, cystic fibrosis is still a life limiting disease. Many people are waiting for a breakthrough medicine to help them, others are experiencing CF related complications like infections, diabetes or lung disease and continue to be hospitalized. And the emotional and mental burden of CF increasingly emerges.

Up to

of people cannot benefit from CFTR modulators*

of people must travel more than 100km to receive care

15,401

visits were made to cystic fibrosis clinics

8,962

days spent in hospital

3,597

days of home IV treatments

people received organ transplants

of people had Pseudomonas aeruginosa infections

of adults had CF-related diabetes

Average age of death for a Canadian with cystic fibrosis over the last five years*

All statistics except * are based on data published in our Canadian Cystic Fibrosis Registry 2023 Annual Data Report, the most recent year for which data are available. Statistics marked with a * are from the Canadian cystic fibrosis registry.

“When asked what a future without limits looks like to me, I imagine a life where people with CF aren’t held back by the boundaries this disease places on them.”

Alexie, living with cystic fibrosis

Help us tell the rest of the cystic fibrosis story in Canada.

Donate today to fuel continued progress.

Give Now

04

Celebrating your impact

Progress powered by you

As we work towards better, healthier and longer lives for everyone with cystic fibrosis in Canada, we are proud of the achievements we have secured along the way. Achievements that you, our generous supporters, partners, and community members, have made possible.

From local volunteers, event organizers and fundraisers to individual donors and companies, we gratefully celebrate your impact.

Today and in the years ahead, our work is focused on people most affected by and at risk from their cystic fibrosis: those who are sicker, have a higher travel burden, limited clinic resources, are at higher risk of mental health issues, or face barriers to treatment and affordable medication access.

They must not be left behind – and thanks to your support, our work throughout 2024/25 put them first.

“Two years ago, I lost my right lung and was struggling with 30% lung capacity, an enlarged heart, and liver damage. And I was only 25 years old. Doctors said Trikafta was my only hope, but it wasn't available in Canada for my rare mutation.

Fast forward to today. Thanks to Cystic Fibrosis Canada and the incredible CF community, I have access to Trikafta. Now I'm planning my future and even had a baby boy. This is what life without limits can look like.”

Chanelle, living with cystic fibrosis

Helping more people access life-changing treatments

Trikafta access by province and territory*

Trikafta is available for people with:

The most common mutation, F508del

152 rare mutations

152 rare mutations with mechanisms to provide access for other rare mutations

All CF mutations that may benefit

In early 2024, Trikafta had just been approved for children aged two to five with the most common CF-causing gene mutation, F508del – but not all public drug programs were providing access.

Together with our National Advocacy Network, our efforts throughout the year focused on public coverage of Trikafta for this age group and on broader access for people with rarer mutations. We met with politicians, bureaucrats and other decision-makers and influencers, and worked with our clinical trials network to provide strong evidence for broader and more affordable access.

Our results speak for themselves. Today, every jurisdiction funds Trikafta for those aged 2 and up with the most common CF mutation (F508del), and nearly all are funding it for people with one of the 152 rare CF mutations Health Canada approved for use in early 2024. While this is exciting progress, we know that access does not mean affordable access. We will continue to push for broad and affordable access to Trikafta, so everyone who needs it can reach it.

*Map reflects status of Trikafta availability at April 30, 2025.

Finding new solutions through research

Momentum is our research roadmap – our five-year plan for thoughtful investment that will accelerate the impact of CF research and unlock the next wave of improvements.

Aligned with this approach, our work in 2024/25 focused on knowledge and solutions for people who lack treatment options or have a higher burden of disease:

We announced a new $1.2 million partnership with Génome Québec to fund Quebec research into rare mutations, which genetic profiling has found to be especially prevalent there.
Following evaluation by experts who have professional and personal cystic fibrosis experience, we awarded $2 million for nine grants that respond to the needs of the CF community.
We invested $250,000 in five seed grants so researchers can explore and prove new ideas to see if they warrant further investigation. Our partnership with Diabetes Canada on one of the grants helped donor dollars go further.

A man with cystic fibrosis sites cross-legged in the grass.

Making history with the Canadian Cystic Fibrosis Registry

Originally established as a collaborative initiative between researchers in Canada and the United States, the Canadian Cystic Fibrosis (CF) Registry has grown into one of the most comprehensive and longest-running CF registries in the world. It stands as the only nationwide database capturing clinical data on nearly everyone living with CF in Canada. Since 1973, people living with CF and CF clinics nationwide have participated in and contributed to the Canadian Cystic Fibrosis Registry.

This vital resource captures real-world data to provide a population-level snapshot of cystic fibrosis in Canada. It includes demographic information like age and province/territory of residence, as well as genetic mutations and insights into health, therapy use, healthcare system utilization, complications, and transplantation.

We recently celebrated 50 years of collecting and reporting vital information that has shaped CF research, education, advocacy, and clinical care.

Advancing cystic fibrosis treatments

Keeping Canada at the forefront of CF clinical trials supports better access to new and emerging therapies. That’s why our work in 2024-25 included strengthening our network of clinical trial sites to conduct gene therapy trials, which offer hope for people who cannot benefit from CFTR modulators.

At the end of the year, three of 10 sites in our network were offering early-stage gene therapy trials to eligible patients – building expertise that will help these trials expand to other sites.

Gene therapy trials have a smaller population of eligible patients and they are complex and resource-intensive to run – but they represent an exciting area of innovation that could well be the future of CF treatment. These trials will be offered alongside others so that we are continuing to explore a range of potential treatment advancements to support the CF community.

Keeping pace with changing care needs

The CF story has evolved dramatically in the past few years, and a one-size-fits-all solution is not the future for people affected by cystic fibrosis in Canada.

Until new solutions are found, some people will be sicker than others. Others will face diseases of aging while they live with CF. People’s needs will be different, and the care they receive at clinics must reflect this no matter where in the country they live.

Last year, we kicked off work with our clinical community and people affected by CF to create a new model and standard of care for people living with cystic fibrosis in Canada. Clinicians and people living with CF from every province are supporting this work through different advisory and steering committees.

This is a tremendous effort that will profoundly shape and improve the care people receive as their needs evolve.

A young boy performs a lung test with the help of a female medicalprofessional.

Meeting the community where they’re at

To ensure our work stays relevant to the CF community in Canada, it’s essential that we’re attuned to and responding to the evolving and diverse community needs for information and support. We went about this in several ways last year:

We established an advisory group of caregivers to newly-diagnosed infants to help us create a plan to better support this community.
We launched our Breathless podcast for people who are grappling with big life questions they couldn’t have imagined living long enough to answer.
We revamped our volunteer program to better align with the ways people want to contribute their time and talents.
We launched a new website making it easier for our community to navigate and find information.
We developed our mental health hub that connects people in the CF community with resources to help manage their mental health alongside physical care. Created in response to community input, the hub is now available on our new website.

The right team to
deliver on our strategy

In addition to our focus on impact for our CF community, we must ensure Cystic Fibrosis Canada is equipped to continue to deliver on our strategy for longer, healthier and better lives.

A diverse and talented team to inform and carry out our work is a priority for our organization – so receiving the 2024 Canada’s Most Admired Corporate Cultures award from Waterstone Human Capital was a vote of confidence that we are on the right track.

We were proud to receive this honour. Our shared commitment at Cystic Fibrosis Canada to our values – bold, connected, inclusive and impactful – pays off for our staff, volunteers and partners. And most importantly, for our community.

05

Community shout-outs

Strength in numbers

From the thousands of people across the country who give their support to Cystic Fibrosis Canada, to the dollars you raise through events, campaigns, and community fundraisers – you’re helping more people affected by cystic fibrosis to live better, access support, and find hope.

Thank you for being such an important part of Cystic Fibrosis Canada’s story.

65 Roses gala: An evening of hope

Kudos to our 2024/25 Change Makers

Decant gala: Celebrating 10 years

Fusion gala: A night in Rome

Lawn Summer Nights: a record-breaking year

Walk to Make Cystic Fibrosis History: 20 years strong

Face Off with CF Gala

Three elaborate human statues dressed in Rennaissance garb at the 65 Roses gala.

An Evening of Hope

Celebrating the 24th annual 65 Roses Gala

The 65 Roses Gala was more than a fundraiser — it was a declaration of hope. We are incredibly grateful to gala committee members and sponsors, and to our dedicated volunteers and guests for coming together to honour the strength of the CF community. The gala was an unforgettable evening highlighted by inspiring speeches, captivating entertainment, and a lively auction. Your shared commitment to actions supporting the cystic fibrosis community continues to be a source of hope and transformation.

190

attendees

280

raised

Two proud Change Makers, arm in arm, smiling.

Kudos to our 2024/25 Change Makers

Through their dedication and creativity, our incredible Change Makers – the community builders and fundraisers who plan and organize an impressive range of events across Canada– are transforming the future for people living with cystic fibrosis. We celebrated milestones like the 40th Anniversary of the Danny Gallivan Memorial Golf Tournament and the Regina Ride for the Breath of Life , which continue to make a lasting impact.

To support the efforts of these heroic fundraisers and many others, we enhanced the online fundraising tools available for our Change Makers and introduced new planning tools and fundraising resources. Whether hosting golf tournaments, community walks, or virtual challenges, Change Makers from coast to coast to coast are driving progress and positive change for people affected by cystic fibrosis in Canada.

100

events across Canada

million raised

Heather Gilmour and three Decant guests enjoying a glass of wine at the event.

Celebrating 10 years

C2024 Decant Gala Success

The 2024 Decant Gala – Cheers to 10 Years was a remarkable celebration held on Saturday, May 11th, 2024, at Delta Hotels Toronto. It was a record-breaking evening, raising its highest total to date to support the cystic fibrosis community. The Fine Wine Auction hosted by Iron Gate was a standout success, contributing $182,000 to the total. Ben Mulroney’s exceptional emceeing and inspiring keynote speeches by Louise Taylor and Stephanie Stavros made the night unforgettable. Thank you for your unwavering support!

202

guests

510

raised

A night in Rome

2024 Fusion Gala Success

The 2024 Fusion – An Evening in Rome Gala took place on Saturday, October 19th, 2024, at Angus Glen Golf Club. Over the past 22 years, Fusion has raised more than $5.4 million for Cystic Fibrosis Canada, thanks to the unwavering support of donors, sponsors, and partners. This year’s Key To A Cure Donations alone contributed over $100,000. The evening featured a heartfelt keynote speech by Kelly Simpson Strike and her daughter Emily, who lives with cystic fibrosis.

264

guests

430

raised

A LSN participant throw a lawn bowling ball down the green.

A record-breaking year

Lawn Summer Nights 2024

In July 2024, we hosted classic and pop-up Lawn Summer Nights events across Canada and achieved a milestone with more than $5 million raised over its 14-year history!

These fun-filled nights not only support cystic fibrosis research and care but also foster a strong sense of community. Participants shared inspiring reflections on the joy of lawn bowling, connecting with longtime supporters, and returning year after year for a cause they deeply believe in.

locations

160

teams

885

participants

326

raised

Three junior Walkers wearing superhero capes enjoy the event.

20 Years Strong

2024 Walk to Make Cystic Fibrosis History

On May 26, 2024, the 20th anniversary of the Walk to Make Cystic Fibrosis History brought together families, advocates, and supporters to raise awareness and funds. This year we introduced Walk Jr, where over 135 children raised more than $114,945, bringing the grand total raised from the Walk to an impressive $2.4 million!

Heartfelt testimonials highlighted the importance of ensuring all Canadians with cystic fibrosis, especially those with rare mutations, have access to breakthrough therapies. Thank you for 20 years of unwavering dedication to the CF community!

4000

participants across Canada

raised

Face Off with CF Gala

Face Off with CF Gala celebrated its 33rd year, raising a record-breaking $264,000 in 2025. Honorary chair and NHL player Ryan Nugent-Hopkins brought his magic to the event again, helping us celebrate another unforgettable night of giving in Edmonton.

years

264

raised in 2025

06

Thank You For Your Support

Making progress, together

Our generous supporters make it possible for some Canadians with cystic fibrosis to live longer — and to keep fighting the heavy burden CF places on health, finances, and family life.

Your gifts fuel vital work in research, clinical trials, care, support, and advocacy, ensuring no one is left behind.

Thank you for your continued commitment.

National corporate partners

We are deeply grateful for the unwavering support of our corporate partners, whose generosity and commitment have played a pivotal role in driving real change for Canadians living with cystic fibrosis. The leadership of these organizations has demonstrated remarkable dedication, embedding a culture of giving that inspires action at every level. From strategic sponsorships to employee-driven fundraising initiatives, their contributions have had a profound and lasting impact on the community we serve. We especially acknowledge the enthusiasm and hard work of employees who not only raise vital funds but also bring energy, creativity, and heart to every campaign and event. Together, their collective efforts are transforming lives and creating meaningful change.

Leadership Circle

We extend our heartfelt thanks to donors in Cystic Fibrosis Canada’s Leadership Giving Circle—individual philanthropists and charitable foundations whose exceptional generosity and vision have been instrumental in driving our work forward. These dedicated supporters lead with compassion and a deep belief in the power of positive change for the cystic fibrosis community. Their significant contributions go far beyond financial support; they are partners in our mission, offering insight, vital resources, and unwavering encouragement. Through their leadership, we are empowered to go further in advancing treatment and care, and dream bigger for our community. Their impact is profound, and we are honored to recognize their enduring commitment to making a difference.

Arrell Family Foundation

The John & Ellie Voortman Charitable Foundation

Clint and Nancy Griffin

Sandra Tapper

Walmart Canada

Ronald Black

Jacqueline and Walter Voortman

Bayshore Foundation for Empowered Living

Sarah Gordon Sutherland Memorial Fund

John and Marlene Mason

The Charles H. Ivey Foundation

Françoys Levert

Sandy Gray

Banque Nationale Du Canada

Cougs Investments Ltd

JB Schultz Family Foundation

Whitecap Resources Inc

Louise Redekop

Anthony Quinn

Richard and Charlene Klassen

Ross Hopkins

Leona and Max Pinsky

Isaac and Judy Thau

Scott Doherty

The Louis & Harold Price Foundation

Éric Voyer

Valerie Archer

Owen and Elizabeth Bell-Santilly

Vincent Lee

Enterprise Mobility Foundation

W. Fay Versteegh Charitable Fund

Ron and Kim Anderson

Dori-Ann and George Stubos

Scott Johnson

Eleanor Carpen

Charles and Grace Thomson Designated Fund

Lynn Laird

Betty McIlroy

Dr Patrick McDonald

ES Fox Limited

Fondation Bergeron-Jetté

Lembit and Karen Janes

Les Placements Al-Vi Inc.

Mary Sanagan and Aaron Mittler

Nadir Electric Ltd.

Power Corporation of Canada

Canada Life

Reginald and Julie Smith

Van Allen Insurance Inc.

Shane Griffin

Mike Farwell and Jennifer Peacock

Laurie and Patrick Scissons

RBC

George Macri

Bob and Joan Lidington

Amielle Lake

Belron Canada

Leon's Furniture Limited

Trademan Family Foundation

William Bressmer

Marr Family Charitable Account

Gerald and Rita Schaefer

Drake Family Trust

Charles Sirois

FYidoctors / Visique Enhancing Life Foundation Flow Through Fund at
Calgary Foundation

Lynda Hedican and David Dutcyvich

Canadian Appliance Recycling Enterprise (CARE)

Rod and Gretchen Ziegler

Roland Laird

Doris L. Bruder Charitable Fund

Christiane Aupry

Burgundy Legacy Foundation

William Bamber

Brayden Irwin

David Watson

Brad and Nancy Kotush

Barbara Hill and Mike Canzoneri

Adele Rempel

Susan Dudar

Eric Roussel

Keri Johnston and Darin Renton

Frances Ostry

Claire Lalonde

Andrew and Marina Davies

Kimberley Camboia and Jordan Oxby

Gregory and Karen Fries

Jim and Bonnie Schultz

John Dungey

Maxime Laliberté

Douglas Miehm

Lyle Kerr

Karen and Greg Fleck

Daniel Lalonde

Pan-Oyler Foundation

Norah and William Marr

Amy and Bart Corbett

Butler Mortgage Inc

Congrégation des Soeurs Maristes (maison mère)

David Sawrey and Debra Carmont

Dominique Toupin

Eliane B Perreault

Eric T. Webster Foundation

Fondation Famille Bertrand

Fondation Famille Vachon

High River District Health Care Foundation

Horn Family Fund

Jean and Cynthia Scott Aucoin

Jim and Marilyn Blair

Jim Decksheimer

Leslie Raenden

Ocean Ridge Fisheries Limited

Robert and Carolyn Sankey

Ryan Black

Sean Murphy

Miles Nagamatsu

Spesinvest Inc.

The Longevity Company of Canada Inc.

The Stephen and Barbara Allatt Foundation

Timothy R. Kramer

Todd and Sharon Kelly

We have made every effort to ensure the accuracy of this list. If you have questions or corrections, or wish to join this list and play a leadership role in moving the cystic fibrosis community towards a brighter future, contact us at leadershipgiving@cysticfibrosis.ca.

Volunteers

Volunteering is a win-win for us all! By giving their time and talents, volunteers foster positive change in the lives of families affected by cystic fibrosis while building new relationships, sharing their expertise and expanding their professional networks.

2024 Award Recipients

A special thank-you and congratulations to the 69 community members who received the King Charles III Coronation Medal or one of Cystic Fibrosis Canada’s Community Awards. These distinguished honours celebrate individuals and groups whose dedication, leadership, and generosity have helped to advance progress in cystic fibrosis research, care, and advocacy.

CFC Volunteer landyards in a large pile.

King Charles Coronation Medal Recipients

Agatha Bourassa

Anne-Marie Beausoleil

Beth Vanstone

Brenda Chambers-Ivey

Carole Moisan

Caroline Rigutto

Cassidy Evans

Cheryl Corcoran

Chris Black

Claude Provencher

Daniel Dettmers

Daniel Leblanc

Dave Anderson

David Watson

Donna Summerhayes

Doug Summerhayes

Elizabeth Graham

Hailey Laxer

Ian Thompson

Jean Hodgins

Jean-Sebastien Ferron

Julie Saucier

Karen Fries

Karen McCulloch

Kim Wood

Leona Pinsky

Lisette Tremblay

Lorna McEwan

Macrina Perron

Mark Shopland

Megan Parker

Mitch Lepage

Nancy Kotush

Paige Shemilt

Patti Tweed

Rita Steiner

Rod Brind'Amour

Ron Anderson

Ryan Nugent-Hopkins

Stacy Hipkin

Stephanie Fryers

Stephanie Stavros

Tammy Strong

Teresa Weger

Teri Lang (posthumously)

Tony Arrell

Twyla McDougall

Valérie Tremblay

Cystic Fibrosis Canada Community Award Recipients

Amanda Bartels, Leadership in Advocacy Award

Gabrielle Phaneuf, Eva Markvoort Award

Kin Canada, National Champion Award

Lauren Clift, Pamela Summerhayes Award

The Robbie International Soccer Tournament, Beyond Limits Award

The Czajkowsky Family, Céline Award – Ontario Region

Project Trident, Change Maker of the Year Award – Québec Region

David Graham, Change Maker of the Year Award – Ontario Region

Queen City Eagle Riders, Financial Impact Award – Western Region

Emily Lyons, Financial Impact Award – Ontario Region

Earl Tripp, Financial Impact Award – Atlantic Region

Erin Dumville – Julia – Young Philanthropist Award - Atlantic Region

The McIntyre Family, Mila Mulroney Award – Western Region

The Arthrell Family, Mila Mulroney Award – Ontario Region

Les Grenouilles, Mila Mulroney Award – Québec Region

The Richards Family, Mila Mulroney Award – Atlantic Region

John Windwick, Volunteer Impact Award – Western Region

Chad Larmond, Volunteer Impact Award – Ontario Region

Sienna Kras, Youth Impact Award – Western Region

Katrina Davis, Youth Impact Award – Ontario Region

Benjamin Pérusse, Youth Impact Award – Québec Region

Breath of Life monthly donors

Thank you to our monthly donors who provide a regular infusion of hope for every person affected by cystic fibrosis in Canada. Your consistent generosity creates sustained support for ongoing progress to reduce the burden of cystic fibrosis.

Honouring a family’s vision

A brighter future for families affected by cystic fibrosis is at the heart of Erik and Birthe Andersen’s legacy.

The couple moved to Canada from Denmark in the 1950s and built a life together filled with love and purpose – but also heartbreak. Their daughters, Elisabeth and Esther, were both diagnosed with CF and passed away at the ages of three and 15, respectively.

Not wanting any other family to experience such profound loss, Erik and Birthe made supporting Cystic Fibrosis Canada a focus. They became monthly donors and after Erik passed away in 2009, Birthe continued the family’s support.

The Andersen’s legacy lives on through the Erik and Birthe Andersen Senior Scientist Award, created by Cystic Fibrosis Canada in recognition of the planned gift in their will. By supporting innovative research, this award honours the Andersen’s vision of a future where no family loses a loved one to cystic fibrosis.

Thank you to all of our legacy donors for planning a gift that will help future generations live longer and fuller lives with cystic fibrosis.

07

Transforming Tomorrow

As we push forward, we need you by our side

You’re here because you care about the future for people affected by cystic fibrosis.

Your support has driven critical progress in research, care, and advocacy — bringing hope and real change to thousands of families.

But our mission to rewrite the cystic fibrosis story in Canada is far from over.

Many people living with CF still face significant barriers to a healthy, long, and full life.

Some face treatments that are too expensive to access, or the consequences from years of lung damage. Others don’t have treatment options that will help.

Yes, we have celebrated new and promising survival milestones.

But we continue to lose too many people far too young.

A little boy wearing his Walk to Make Cystic Fibrosis History t-shirt.

That's why we need you by our side now more than ever.

Together, we can help everyone in Canada’s cystic fibrosis community achieve a life without limits.

Buoyed by the progress of the past 65 years, let’s make the next 65 years not just the end of the cystic fibrosis story, but the new beginning that everyone in Canada’s cystic fibrosis community deserves.

08

Goverance and Financials

Board of Directors

Our Board of Directors guides the strategic direction of Cystic Fibrosis Canada to support Canadians living with cystic fibrosis in the most effective ways. As leadership volunteers, they have a wide range of personal and professional expertise.

Barbara M. Hill

Robert Deane, Vice Chair

John Bennett

Karen Corraini

Kathryn Deuchars

Marie-Pier Emery

Adam Gordon*

Vincent Hamel

Chelsea Jalloh

Françoys Levert

Aleka MacLellan

Stephen McCourt**

Kimberly Nemeth*

Stephanie Nerlich

Robert Sankey**

Eric Saumure*

Tim Trussell

*Term began April 26, 2024
**Term ended April 26, 2024

F2025 Financials

Cystic Fibrosis Canada is fully committed to transparency and accountability of financial information. We remain in a favourable financial position as we continue to strategically invest generous donor dollars into vital cystic fibrosis research and care, to ensure donations achieve the greatest impact.

Statement of Operations

(in thousands of dollars)
Year Ended January 31, 2025, with comparative information for 2024

Revenue

Revenue	2025	2024
Community events	6,909	7,345
Annual giving	1,826	2,076
Leadership gifts and sponsorship	1,496	1,617
Kin Canada	548	566
Other	1,353	1,055
Royalties	5	44
Bequests	2,347	795
Total	14,484	13,498
Less direct fundraising costs	3,156	3,133
Net fundraising revenue	11,328	10,365

Expenses

Program	2025	2024
Research	4,056	2,935
Healthcare	1,290	1,341
Community engagement	1,794	1,832
Advocacy	583	754
Other	11	59
Total	7,734	6,921

Other	2025	2024
Administration	1,955	2,204
Fundraising	1,556	1,442
Total	3,511	3,646
Excess (deficiency) of revenue over expenses before the undernoted	83	(202)

Investment Income (Loss)

Investment income (loss)	2025	2024
Realized gains on investments	361	374
Change in unrealized gain (loss) on investments	126	(2)
Total	487	372
Excess of revenue over expenses	570	170

Statement of Financial Position

(in thousands of dollars)
January 31, 2025, with comparative information for 2024

Assets

Assets	2025	2024
Current Assets
Cash and equivalents	8,433	8,056
Short-term investments	1,337	1,458
Receivables and other assets	955	1,296
Total	10,725	10,810
Contributions receivable	182	161
Long-term investments	4,694	4,407
Capital assets	612	688
Total	16,213	16,066

Liabilities and Net Assets

Liabilities and Net Assets	2025	2024
Current liabilities
Accounts payable and accrued liabilities	511	693
Deferred revenue	712	850
Total	1,223	1,543
Long-term liabilities	798	901
Net Assets
Endowment	94	94
Internally restricted for research and healthcare	2,704	2,769
Invested in capital assets	230	208
Internally reserved for strategic impact fund	1,500	-
Unrestricted	9,664	10,551
Total	16,213	16,066

STATEMENT OF CHANGES IN NET ASSETS

(in thousands of dollars)
Year ended January 31, 2025, with comparative information for 2024

	Endowment	Internally restricted for research and clinics	Invested in capital assets	Internally reserved for strategic impact fund	Unrestricted	2025 Total	2024 Total
Net assets, beginning of year	94	2,769	208	-	10,551	13,622	13,452
Excess of revenue over expenses	-	-	(66)	-	636	570	170
Investment in capital assets	-	-	88	-	(88)	-	-
Transfer between funds	-	(65)	-	1,500	(1,435)	-	-
Net assets, end of year	94	2,704	230	1,500	9,664	14,192	13,622

Complete audited financial statements are available on our website at cysticfibrosis.ca.

65 years ofrewriting the cystic fibrosis story in Canada

Message from Cystic Fibrosis Canada’s Board Chair and President and CEO

Impact snapshot

Selected 2024-25 highlights, made possible by you

01

About our community

Hope through progress

About Canada’s cystic fibrosis community*

02

Our story so far

Celebrating 65 years of progress

Transformational scientific discovery

Transformational scientific discovery

Earlier diagnosis

More people diagnosed through newborn screening

Percentage of cystic fibrosis cases in Canada diagnosed through newborn screening

Improved access to life-changing treatment

Better access to life-changing treatments

Timeline of Trikafta access in Canada

Longer lives with cystic fibrosis

People are living longer with cystic fibrosis

Median age of survival in Canada for babies born with cystic fibrosis

Expanded access to clinical trials

Greater access to clinical trials

Better care, closer to home

Better care, closer to home

Growth of cystic fibrosis clinics across Canada

A stronger clinical community

Training more CF specialists

03

Writing our next chapter

Our work is not done

“When asked what a future without limits looks like to me, I imagine a life where people with CF aren’t held back by the boundaries this disease places on them.”

Help us tell the rest of the cystic fibrosis story in Canada.

Donate today to fuel continued progress.

04

Celebrating your impact

Progress powered by you

“Two years ago, I lost my right lung and was struggling with 30% lung capacity, an enlarged heart, and liver damage. And I was only 25 years old. Doctors said Trikafta was my only hope, but it wasn't available in Canada for my rare mutation.

Fast forward to today. Thanks to Cystic Fibrosis Canada and the incredible CF community, I have access to Trikafta. Now I'm planning my future and even had a baby boy. This is what life without limits can look like.”

Helping more people access life-changing treatments

Trikafta access by province and territory*

Finding new solutions through research

Making history with the Canadian Cystic Fibrosis Registry

Advancing cystic fibrosis treatments

Keeping pace with changing care needs

Meeting the community where they’re at

The right team to deliver on our strategy

05

Community shout-outs

Strength in numbers

65 Roses gala: An evening of hope

An Evening of Hope

Celebrating the 24th annual 65 Roses Gala

Kudos to our 2024/25 Change Makers

Kudos to our 2024/25 Change Makers

Decant gala: Celebrating 10 years

Celebrating 10 years

C2024 Decant Gala Success

Fusion gala: A night in Rome

A night in Rome

2024 Fusion Gala Success

Lawn Summer Nights: a record-breaking year

A record-breaking year

Lawn Summer Nights 2024

Walk to Make Cystic Fibrosis History: 20 years strong

20 Years Strong

2024 Walk to Make Cystic Fibrosis History

Face Off with CF Gala

Face Off with CF Gala

An Evening of Hope

Celebrating the 24th annual 65 Roses Gala

Kudos to our 2024/25 Change Makers

Celebrating 10 years

C2024 Decant Gala Success

A night in Rome

2024 Fusion Gala Success

A record-breaking year

Lawn Summer Nights 2024

20 Years Strong

65 years of
rewriting the cystic
fibrosis story in Canada

The right team to
deliver on our strategy