Embracing hope and optimism for the future with CPFF
A message from Sharon Lee, Executive Director, Canadian Pulmonary Fibrosis Foundation (CPFF)
As I reflect on the journey we’ve embarked on together, I am filled with a profound sense of gratitude for every one of you. March 5th marked my sixth year in the leadership role of the Canadian Pulmonary Fibrosis Foundation, and made me pause to reflect on the strength and resilience within our community.
From humble beginnings as the sole employee, I am immensely proud to witness the growth of our organization into a thriving team of three, full-time staff along with a number of dedicated contractors, each contributing their unique talents and passion to our shared mission. Together, with all of you – our volunteers, Board directors, and supporters – we’ve achieved milestones, overcome challenges, and forged meaningful connections that have propelled us forward in our fight against pulmonary fibrosis.
Please take a moment to see how CPFF is reaching out to you, as well as to health care professionals, governments, the media and the public, during our Rare Disease Campaign 2024. Back in 2021, our focus on Rare Disease Day was on the role of the family physician as the PF patient’s “quarterback, ” in supporting you on your PF journey. We’re reaching out to health care professionals again this year urging them to “Tackle the Crackle©,” to know the signs of PF, and to listen to you. We’ve also built a new online resource library for health care professionals.
In closing, I’d like to thank you for your continued dedication, passion, and resilience. Here’s to the next chapter of our journey, filled with hope, progress, and endless possibilities.
Seeking a solution to the troublesome cough of ILD
About 80 per cent of people living with pulmonary fibrosis (PF) are plagued with a chronic cough. It can be exhausting and embarrassing, and has a major impact on patients’ physical activity, social participation, and overall quality of life.
Leveraging a $20,000 research grant from the Canadian Pulmonary Fibrosis Foundation (CPFF) Dr. Ciaran Scallan and his colleagues at the Firestone Institute for Respiratory Health in Hamilton, are about to begin a clinical trial involving 120 participants that may help patients manage this life-altering symptom of PF. Watch a video of Dr. Scallan explaining the study, during a research update to the CPFF Board of Directors in January.
Dr. Scallan and his co-primary investigators Dr. Terence Ho and Dr. Imran Satia (all assistant professors at McMaster University) will be studying the feasibility of using a sputum (phlegm) guided approach to treat chronic cough in PF patients using inhaled corticosteroids and azithromycin (a macrolide antibiotic) during a 16-week period.
The study will be the largest of its kind to study cough in ILD and will include several innovative factors, including a precision-medicine focus and the use of a 24-hour monitoring device to measure cough, both before and after the treatment programs.
“There are likely multiple overlapping mechanisms contributing to cough in PF,” says Dr. Scallan, “and most treatment options used today only modestly improve this symptom. In this study, we’ll analyze sputum samples to identify and characterize inflammation in the airways to direct specific treatment of PF- associated chronic cough, similar to other respiratory diseases, including asthma and types of bronchitis.”
Study participants will be randomized to either a “sputum-guided approach to cough management” group, or a “traditional-approach to management” group. Results from each group will then be compared.
“This all started with the grant we were very lucky to receive from the CPFF in 2021 for $20,000. Using that funding, we were able to complete our retrospective study and generate a protocol and we were awarded $191 ,000 from the Hamilton Academic Health Sciences Organization,” says Dr. Scallan. Some of that funding will be used for the labour-intensive sputum analysis, which is still done manually by lab technicians. Substantial in-kind funding was also secured from Vitalograph, which will supply the 24-hour, cough monitoring data for each patient, before and after each treatment protocol.
“We are extremely grateful to the CPFF for funding this research project, allowing us to explore a novel and personalized approach to the management of a symptom that is a significant burden for many individuals,” says Dr. Scallan. “I cannot emphasize enough the importance of this type of funding, especially for investigators early in their careers.”
CPFF Board members applauded Dr. Scallan’s success in leveraging a relatively small research grant into a significant research project, which may make a difference to so many in our PF Community. The study will begin recruiting participants next month, mainly from Firestone Institute for Respiratory Health in Hamilton, and anticipate publishing the study results in the fall of 2025. We will share those with you when they are available.
Rare Disease Campaign 2024 aims to Tackle the Crackle©
February 29 was Rare Disease Day around the world, and our campaign here in Canada continues throughout the month of March.
During this year’s Rare Disease campaign, CPFF continues to build Canada-wide awareness for PF, the impact it has on people affected by the disease, and the importance of early diagnosis and equitable oxygen access. Our community has expressed how important it is to spread the word amongst healthcare professionals, so we have ramped up support for these professionals with a dedicated resource library and outreach efforts.
Awareness campaign activities
- CPFF’s new Tackle the Crackle© campaign launched on Rare Disease Day and highlights the importance of having a physician listen to a person’s lungs for the tell-tale crackle sound of PF for anyone experiencing one or more of the three most common early symptoms.
- Watch our new patient video with Wendy and Tina Khan, talking about their father Jawaid Khan, who passed away from pulmonary fibrosis. They share how a supportive family and community was crucial to helping them navigate this disease. They speak to the challenges and triumphs of oxygen therapy, their quest to build PF awareness, and the hope they have for the future.
- Read our news release highlighting the increased risk of pulmonary fibrosis (PF) for those with long COVID, as well as connective tissue disease.
- Follow us on Facebook, Instagram, YouTube and X (formerly Twitter), as we feature various parts of the campaign.
CPFF is now on TikTok @the.cpff
We’ve just launched on TikTok. You can follow us by scanning the QR code with the camera on your mobile phone. Check it out and share our videos.
Get involved
You’ll find several opportunities to participate in the Rare Disease campaign.
- Share your story of a rare individual with pulmonary fibrosis, or of someone caring for a person with PF.
- Increase awareness of PF by taking part in the Pucker Up Challenge. Record yourself breathing through a straw and nominate a friend to take the challenge. Then post on social media using hashtag #puckerupchallenge and tag CPFF so we can help amplify your message.
- Pay tribute to a rare individual by making a donation to send a tribute or memorial card.
- Send an email asking your MPP or MLA to take the Pucker Up Challenge and share a 30-second video of their experience of what it feels like to work hard for every breath. We’ve prepared an email message for you to just copy and paste.
Advocacy Update
Rare Disease Day in Ottawa
CPFF Executive Director Sharon Lee attended the Canadian Organization for Rare Disorders’ (CORD) Rare Disease Day Summit and Advocacy Day in Ottawa on February 28 and 29.
Ms. Lee met with several parliamentarians to urge them to take action on Canada’s drugs for rare disease strategy, which was announced last year and is intended to provide a pathway for coverage of rare disease drugs.
Monitoring Ontario’s budget
CPFF continues to reach out to Ontario MPPs to negotiate with the federal government for funding through the rare disease strategy.
Following our presentations to the provincial government last December and this January, we are also monitoring progress in Ontario’s 2024-2025 budget development, to see if they will respond to our requests.
What do you think we should advocate for in your province?
Health care is delivered by each province or territory, and unfortunately, access to pulmonary fibrosis care varies across the country. We’d like to know what you think CPFF should advocate for in your province. Maybe it’s reducing the time it takes to see a specialist? Or better coverage for oxygen therapy? Send an email to [email protected] and share your concerns with us.
We’d also be interested in knowing if you have any contacts with elected officials or public servants in your province that may help us gain access to government representatives in your province or territory. If so, send us an email with your full name, your province or territory, and a phone number where you can be reached to [email protected].
Executive Assistant joins CPFF staff
Shelly Monaghan, a seasoned administrator and HR professional (CHRL), joins the Canadian Pulmonary Fibrosis Foundation (CPFF) as Executive Assistant.
With a wealth of experience in both non-profit and private sectors, she will support the Executive Director, manage Board communications, coordinate meetings, and collaborate with other CPFF team members to ensure project deadlines are met.
Sharon Lee, Executive Director, welcomes her aboard, emphasizing the value she brings to the organization.
Hope and Ollie…revisited
Accepting What Is
PF & CTDs
This month, we’re revisiting a couple of last year’s Hope and Ollie strips. Sandi Bjorgum finds hope and healing as a PF caregiver in her video story. It has helped her accept what it is. And, the video serves as an earlier reminder that the first Tuesday in April is National Caregivers Day.
People with connective tissue diseases (CTDs) are at greater risk of developing pulmonary fibrosis (PF). Find out more on our Rare Disease Campaign webpage.
Visit the Hope and Ollie webpage to see all of the comic strips published to date. Let us know what you think by sending your feedback to [email protected].