2024 Awareness Campaign the best ever!
You did it – and then some. Our original goal was to raise $100,000. With early results surpassing that goal, we challenged ourselves to hit $150,000. In total, this year’s Awareness Campaign for PF, raised $163,100. Well done you!
More than 850 people took part in nine walks held across the country, a significant increase from last year. Two new community walks in Winnipeg and Saskatoon were large contributors to this increase, along with two, Do-it-Yourself (DIY) walks organized by volunteers in Kelowna, B.C. and Yarmouth, N.S.
Our campaign messages engaged social media followers, and more people visited our website, became support group members, and subscribed to our newsletter and event notifications. The campaign also earned close to 26 million media impressions with outstanding media coverage.
Local elected officials attended several community walks, where participants completed postcard messages to be delivered to their provincial ministers of health. And local monuments – signs, buildings, towers and bridges – were lit up in red and blue in recognition of our cause.
“We thank everyone who took part in a community walk, volunteered, donated, presented a webinar, or sponsored our Awareness Campaign,” says CPFF Executive Director Sharon Lee. “Along with our staff, we could not have done this without your contributions.”
We also added four new videos of webinars presented during the Awareness Campaign. Watch them anytime. Visit our video library often; new patient stories and educational offerings are always being added.
And, take a moment to check out our photo gallery from the community walks. You may just see your smiling face.
Mastering oxygen: Understanding equipment and support for better health
Tune in to this webinar as respiratory therapist Simon Lu from oxygen provider Careica Health explains the benefits of oxygen therapy, describes at-home or on-the-go oxygen equipment, and offers support to help you live life to the fullest.
This webinar will guide you through:
- What home oxygen therapy is
- Different types of oxygen equipment
- Physiological effects of pulmonary fibrosis and how oxygen can help
- Qualifications for the Manitoba Oxygen Program (visit our How to Access Home Oxygen in Canada Guide for qualifications in your province)
- Types of equipment covered and not covered in Manitoba (visit our How to Access Home Oxygen in Canada Guide for coverage in your province)
- Common oxygen-related questions and answers
This is a live presentation that was hosted by the Winnipeg PF support group and filmed by CPFF. We thank our Winnipeg community leaders for supporting PF patients and caregivers and for inviting us to film and share this educational webinar.
CARE-PF registry to receive federal rare disease funding
Canada’s Drug Agency recently announced that the University of British Columbia and Providence Health Care Society has been awarded $172,350 to expand and enhance the world’s leading pulmonary fibrosis patient data registry – the Canadian Registry for Pulmonary Fibrosis (CARE-PF). The funding is part of the National Strategy for Drugs for Rare Disease.
“This funding will help us improve the quality of the CARE-PF dataset by substantially increasing enrolment and retention of previously under-represented populations,” says Dr. Christopher Ryerson, a member of CPFF’s Medical Advisory Board, Professor, Dept. of Medicine and Centre for Heart Lung Innovation, UBC. He will lead the project, which involves 22 other respirologists from across the country, along with a host of other specialists, trainees, and support staff.
This federally funded CARE-PF project will include the following enhancements:
- Establish a CARE-PF Community Advisory Network.
- Design and build a public-facing CARE-PF website.
- Develop processes and infrastructure for an electronic consent platform that enables remote patient consent for participation in CARE-PF.
- Develop processes and infrastructure for electronic data capture that supports baseline and continuing collection of patient-reported outcome measures for CARE-PF from under-represented populations and facilitates automated quality control.
- Develop a strategy to address barriers to participation and increase inclusivity of CARE-PF.
“Achieving these objectives will allow CARE-PF to better reflect the experience of all Canadians with pulmonary fibrosis,” says Dr. Ryerson. “These improvements will also facilitate future clinical trial design and conduct, and enhance the ability of CARE-PF to answer specific questions from regulatory bodies about new drugs for rare diseases.”
CPFF will keep you posted about the progress of this latest CARE-PF project and how you can participate in CARE-PF.
CARE-PF collects clinical data, healthcare resource use data, and patient-recorded outcome measures to advance knowledge on diagnosis, management, and prognosis of pulmonary fibrosis. The eight CARE-PF sites across the country have enrolled more than 6,000 patients since its creation in 2015. Each year, another 1,000 patients are added.
CARE-PF has the highest academic output globally, with 42 original research publications since 2018 and more than 30 additional manuscripts in progress. The primary focus of CARE-PF has been to efficiently address clinically relevant questions that directly translate to patient care and are relevant for health policymakers.
CPFF’s 2025 advocacy plans are now underway
Successful advocacy requires the ongoing building of relationships with elected officials, public servants and other government decision makers.
Provincial advocacy days
CPFF will be holding a provincial advocacy day and evening reception in Manitoba, Prince Edward Island, and Ontario in 2025.
Anyone interested in assisting with the organization of these events can email Puneet Luthra, CPFF’s Manager of Government Relations, at [email protected].
Health economics research
CPFF is currently identifying organizations to document the cost savings and quality of life improvements associated with government funding for supplemental oxygen and pulmonary rehabilitation. This evidence will be shared with all provincial governments as part of CPFF’s advocacy efforts. The report is expected to be complete by January or February, 2025.
October election results and future engagement
Three provinces held elections in October 2024 – Saskatchewan, New Brunswick and British Columbia. The results are as follows:
- In Saskatchewan, Scott Moe and the Saskatchewan Party were re-elected.
- New Brunswick will have a new Premier after Blaine Higgs lost to the Liberal’s Susan Holt.
- David Eby’s NDP government has returned to government with a smaller majority.
CPFF will be engaging with these provincial governments, both old and new, with CPFF’s recommendations on access to oxygen therapy, pulmonary rehabilitation, and new drug therapies. We will also share with them the valuable feedback written on the postcards to the ministers of health at the PF walks in September.
Breathe easier with a will and an advance care plan
By Sharon Lee, Executive Director, CPFF
Throughout my years with the Canadian Pulmonary Fibrosis Foundation, I’ve listened to many patients and their family members. They are often concerned about making decisions about their care as their disease progresses, and communicating their wishes to their family members. To help address some of these concerns, we’ve created a new section on our website: Advance Care Planning.
As a caregiver to a loved one with a chronic illness, I have felt firsthand the peace that comes with having an advance care plan (ACP) and a clear will in place. Taking care of my father as he battled his illness was challenging, but knowing his wishes and having his decisions documented made an immense difference for our family. It gave us a sense of direction and comfort, allowing us to honor his preferences and feel more at peace throughout the journey.
Advance care planning is about much more than documentation; it’s a lifelong process of reflecting on what truly matters to you — your values, goals, and the kind of care you wish to receive. For our family, having these discussions brought us closer and allowed us to focus on what was meaningful to my father. Knowing his preferences ahead of time was a great gift to us all and was instrumental in the healing process after he passed.
November is also “Write Your Will Month,” and the Canadian Pulmonary Fibrosis Foundation (CPFF) offers a comprehensive Guide to Preparing Your Will to help you think about your legacy and plan in advance with the support of legal and financial professionals. This guide provides valuable insights for anyone drafting a will, particularly if you’re considering leaving a bequest to CPFF to further support those affected by pulmonary fibrosis.
CPFF’s advance care planning resources, including Five Steps to Creating an Advance Care Plan and the Advance Care Planning webinar, featuring Karine Diedrich from the Canadian Hospice and Palliative Care Association, are an excellent starting point. I encourage anyone facing similar circumstances to begin creating an ACP, as it offers invaluable peace of mind for both you and your loved ones.
Family members sparkle for life despite PF
By Twyla Harris Naciri, Saskatoon, Saskatchewan
Pulmonary fibrosis has taken from my life on several occasions. We have a long history with the disease in our family. On my dad’s side of the family we have had three who have fought this horrible disease. And on my mom’s side of the family, we have also been attacked by pulmonary fibrosis.
My Grandpa Clarence, aka Pops, spent years fighting this disease. Pops was a special guy; he had a jolly chuckle that came from his belly and a crooked smile that made you see that twinkle in his eyes. He spoiled his grandchildren and made sure to have fun with us all. He loved being a farmer and taking care of the land where I grew up. Pops and my Dad farmed the land together and raised cattle. When Pops was diagnosed, it took a lot of his pleasures away, but it did not take his sparkle for life. We lost Pops on my 19th birthday in 2004, while he waited for his gift of life to arrive.
“Daddio” lived each day to its fullest
Submitted by Monique Saghdjian
Noubar, husband to Ardemis, and our dad – our Daddio, was diagnosed with idiopathic pulmonary fibrosis early in 2023, though we can say without doubt the symptoms were there long before.
His diagnosis didn’t stop him from doing the things that he loved: fishing, hunting, golfing, travelling, and above all creating memories with his family and many friends. In his last year, from the point of his diagnosis, to fighting a short battle with small cell lung cancer, he lived his life to the fullest. He lived his life day by day, no moment could be wasted, and never planning weeks or months ahead, save for his annual moose hunting trip with his friends.
Deadline for CPFF Robert Davidson Fellowship applications is next month
Attention researchers and ILD clinic directors. The application deadline for the CPFF Robert Davidson Fellowship for 2025-2026 is December 15, 2024. Responses will be sent out on, or before, March 15, 2025. You can find all the relevant information here.