Pulmonary fibrosis looms large for a growing number of Canadians
If you have a connective tissue disease (CTD), such as scleroderma, rheumatoid arthritis (RA) or lupus, you are at greater risk of developing pulmonary fibrosis (PF).
The chances of getting progressive PF varies according to your connective tissue disease.
During our 2025 Rare Disease Campaign, we’ll be reaching out to people with CTDs to learn the signs of PF, and to ask their doctor to take the four seconds needed to listen for “crackles” in their lungs.
This year’s Rare Disease Campaign includes:
- Campaign launched February 1 with a new “Tackle the Crackle©” ad, which incorporates the CTD risk factor for PF.
- Media outreach to CBC radio outlets with information and interview subjects to discuss CTDs and PF in their broadcasts.
- New patient and caregiver stories.
- A new in-person webinar hosted from Winnipeg on Stress Management, Coping with Loss and Change. It will be posted online for national viewing the following week.
- A new short explainer video describing the links between CTDs and PF, featuring Dr. Janet Pope will be launched on Rare Disease Day (February 28). Check our video library.
Events
Happening Soon
Feb
13
2:15 pm – 3:15 pm EST
Managing Stress and Coping with Loss and Change
Feb
18
7:00 pm – 8:30 pm EST
Newly Diagnosed Family Meetup
Mar
3
7:00 pm – 8:00 pm EST
Caregiver Support Group
Mar
4
3:00 pm – 400 pm EST
National Patient Support Group
Mar
4
7:00 pm – 8:00 pm EST
National Support Group
More ways to connect with one another
You let us know that you wanted an evening session for the virtual National Patient Support Group. And maybe an online session just for those newly diagnosed and their families. We’re delivering.
Newly diagnosed family meetup
If you, or someone you care about, has been diagnosed with pulmonary fibrosis in the past six months, we invite you and your family and friends to attend this virtual meet up on Tuesday, February 18 from 7 to 8:30 p.m. ET.
You’ll be able to meet others who are also just starting this journey; share your experiences, ask questions and get insights on resources available to help you and your family navigate this disease.
Support Group Meetings
- New! We’ve added an evening session to the virtual National Patient Support Group meeting schedule on the first Tuesday of each month from 7 to 8 p.m. ET. This is in addition to the regular sessions on the first and third Tuesday of the month at 3 p.m. ET. Register for upcoming Patient Support Groups here.
- Don’t forget there is a national virtual Caregiver Support Group on Monday evenings – usually twice a month. Register for upcoming Caregiver Support Groups.
- We also offer a virtual support group meeting in French. Register for upcoming French Support Groups.
- Visit our support group webpage for a listing of the many community-based support groups across the country. There’s also information on how to start up your own group.
Webinar
Managing stress and coping with loss and change
February 13, 1:15 pm – 2:15 pm CDT In-person Event in Winnipeg
Chronic diseases can be stressful and lead to poor mental health. Kamara Tayo-Jones, cognitive behavioural therapist at the Wellness Institute in Winnipeg, will share practical strategies to help you build resilience and adapt to your new normal.
In person: Join the Winnipeg support group at Peace Lutheran Church, 350 Gilmore Av, Winnipeg. Arrive at 1 p.m. CDT. The presentation will start at 1:15 p.m. CDT sharp.
On-demand: Check the CPFF video library later in February to view this webinar online.
CPFF prepared for the early election in Ontario
Ontario Premier Doug Ford has called a provincial election for February 27, 2025; well in advance of the October 2026 deadline. To learn more about election candidates, where to vote, and other election information, visit Elections Ontario.
As outlined in CPFF’s pre-budget submission to the Ontario Ministry of Finance, we are advocating that anyone who requires supplemental oxygen should have access, regardless of age. In Ontario, for individuals over 65, the Assistive Devices Program (ADP) provides financial assistance for home oxygen therapy to residents who meet specific medical criteria. For individuals under 65 however, the government covers 75 per cent of the cost of home oxygen therapy. The remaining 25 per cent of the cost is the responsibility of the patient.
Click here to access a letter you can email or print to advocate for full government funding of oxygen access in Ontario, regardless of age, with your local election candidates during the campaign.
Ontario Virtual Advocacy Day
Later this year, CPFF will host a virtual advocacy day for Ontario, to meet with as many new and returning MPPs as possible to share our policy positions on accessing supplemental oxygen.
National Strategy for Drugs for Rare Diseases Roll Out
The federal government continues to sign bilateral agreements with provincial governments to help cover the costs of accessing drugs for rare diseases. To date, nothing pertains directly to PF care or treatment. You can read the agreements signed to date here.
Donate Monthly
Double the impact of your contribution
January has come and gone, but it’s not too late to become a monthly donor for 2025. Anytime this year is the best time to become a Hope Hero.
When you sign up to donate a minimum of $25 a month in 2025, it will automatically double, thanks to a generous donor who will match your gift dollar for dollar.
As a monthly donor, your steady support helps sustain critical programs and services year-round. It means no one has to face this disease alone.
Patient and Caregiver Stories
Dave still enjoys life despite three chronic conditions
It’s not unusual for people living with auto-immune conditions such as rheumatoid arthritis or scleroderma to develop pulmonary fibrosis if their disease progresses and affects their lungs.
In Dave Rasmussen’s case, a diagnosis of idiopathic pulmonary fibrosis (IPF) came first. It was followed by a diagnosis of Sjögren’s syndrome, an auto-immune condition characterized by dry eyes and dry mouth, and eventually he developed rheumatoid arthritis (RA), another auto-immune condition.
Dave regularly visits the CPFF private Facebook page: Canadians Living with Pulmonary Fibrosis. He encourages others to find out all they can about their disease from reliable online sources such as www.cpff.ca. And he is happy to share his experiences with other patients and direct them to accurate information sources.
Kerry Ferguson pays tribute to her husband Bill
“Bill lived for the Tuesday night online group call,” relates Kerry Ferguson in this four-minute video. “There, he could talk with others, who were wearing their oxygen too.”
Kerry shares other touching moments about Bill, who passed away from PF in June 2022, including the support he gave to her while she underwent breast cancer treatment and recovery just months before he died.
She holds hope for future PF patients with more awareness, support and research.
Jeannie Tom’s journey with PF
Prior to her diagnosis, Jeannie Tom of Toronto spent years living with bronchial symptoms, and experienced multiple episodes of flu and pneumonia.
“Nobody ever mentioned PF,” Jeannie says. Over a decade later, Jeannie was finally diagnosed with pulmonary hypertension and pulmonary fibrosis (PF) secondary to scleroderma. In this video she shares her journey with PF, how she remains positive, and strategies to manage her symptoms.
Bobbi-Jo White knows how to build donor relationships
The Canadian Pulmonary Fibrosis Foundation (CPFF) is pleased to welcome our newest donor coordinator Bobbi-Jo White. With 17 years of hands-on experience fundraising for health charities, Bobbi-Jo is keen to lend her expertise to help you make your fundraising ideas a reality.
Working with CPFF’s other donor coordinator Marsha Clyne, Bobbi-Jo will cultivate and steward relationships with donors, manage various fundraising campaigns, and coordinate events, like our community walks, to support the mission and objectives of the CPFF.
“I am passionate about being part of an organization whose mission and vision is focused on improving lives and making a difference in our world,” she says.
I am passionate about being part of an organization whose mission and vision is focused on improving lives and making a difference in our world
Featured Videos
Finding Hope & Healing as a PF Caregiver
So You’ve Been Diagnosed with PF… What’s Next?
PF Symptoms: Know the Signs