April is Caregiver Appreciation Month at CPFF
By Sharon Lee, Executive Director of the Canadian Pulmonary Fibrosis Foundation
April is Caregiver Appreciation Month — a time to pause, reflect, and honour the quiet heroes who give so much of themselves to care for someone living with pulmonary fibrosis.
To every caregiver in our community: I see you. I see your dedication, your resilience, and the love that guides everything you do. Whether you’re managing appointments, offering comfort, advocating for your loved one, or simply being present in the hard moments — please know that your role is deeply valued and never taken for granted.
I am truly grateful for your strength. You carry so much on your shoulders, often without recognition, and still find ways to show up with compassion and grace.
At CPFF, we’re here for you. We remain committed to offering resources, support, and a community where you feel heard, seen, and not alone. Please read article three in this issue to find out some of what we have to help you.
This month — and always — thank you for everything you do. You are a vital part of the PF journey, and we are honoured to stand beside you.
Events
Happening Soon
Apr
10
2:15 PM – 3:15 PM CDT
Healthy Eating for People with Chronic Lung Disease
Apr
14
7:00 pm – 8:00 pm EDT
Caregiver Support Group
Apr
15
3:00 pm – 4:00 pm EDT
National Patient Support Group
Apr
28
7:00 pm – 8:00 pm EDT
Caregiver Support Group
May
5
7:00 pm – 8:00 pm EDT
Groupe de soutien en français
May
6
3:00 PM – 4:00 PM EDT
National Patient Support Group
May
6
7:00 pm – 8:00 pm EDT
National Patient Support Group
To all PF Caregivers: You are not alone
Who are pulmonary fibrosis (PF) caregivers? According to CPFF’s 2024 Patient and Caregiver Survey, 97 per cent of you are a family member of the patient, usually a spouse, and two-thirds of you are over the age of 70. While it can be rewarding to support someone who is living with this progressive disease, it can also be both physically and emotionally draining. Life will be different than before, but it’s still possible to find hope, good times, and a supportive community.
Caregiver resources just for you
You can find links to all of these resources on our Caregiver webpage.
- NEW!! The Pulmonary Fibrosis Caregiver Guide will help you be an effective caregiver and patient advocate, while taking care of yourself too. Full of information, tips and support.
- CPFF Virtual Caregiver Support Groups. Connecting with other caregivers who share similar experiences can be life-changing. Meet virtually for afternoon or evening sessions . Watch this short video with caregivers talking about how the virtual support group helps them.
- A whole series of Caregiver Resources, covering everything from Disability benefits to legal matters and from educational videos and webinars to home safety.
- We’ve also got e-cards that you can send to thank a caregiver. And of course, we’re always pleased to have you share your caregiver story with others in a similar situation.
Advocacy
Be ready when candidates come to your door
With a federal election coming up on April 28, the Canadian Pulmonary Fibrosis Foundation is encouraging supporters across the country to engage with their local candidates by sharing our position that Breathing Should Never Be Hard Work©.
The federal election is a great opportunity to educate local candidates on exactly how pulmonary fibrosis has affected you or your loved ones. To help you do that, we have developed a one-page information sheet that you can print and give to any candidates who show up at your door asking for your vote.
Medical review of home oxygen therapy supports CPFF position
On March 31, 2025, the Canadian Journal of Respiratory, Critical Care and Sleep Medicine published the article: “Harmonizing domiciliary oxygen therapy in Canada”, which highlights the disparities in access and coverage to home oxygen therapy across Canada and makes recommendations to improve the situation.
Authored by Dr. Gokul Vivyasankar, Lisa Wickerson, Sharon Lee and Roberto Zapata, the study reviews the scientific literature on the topic, and refers to a series of surveys conducted by, as well as data collected by, the Canadian Pulmonary Fibrosis Foundation (CPFF). The resulting paper was created in partnership with the CPFF and has been endorsed by the Canadian Thoracic Society (CTS), which is a specialty society dedicated to promoting lung health and best practices for respiratory disease in Canada.
Ms. Lee expresses gratitude to everyone involved with the article: the authors, reviewers, CPFF staff, and the health professionals, oxygen providers and especially PF patients and caregivers, who responded to our surveys.
The article’s publication just before the annual CTS Conference earlier this month, means it will attract the attention of health professionals who attended the meeting.
The publication of this article provides clear evidence for us to continue to advocate for equitable access to home oxygen therapy for all who need it, across Canada,” says Sharon Lee, CPFF Executive Director. “I also hope it acts as a catalyst for further research into the needs of ILD patients for home oxygen therapy.”
Patient and Caregiver Stories
A practical and realistic approach works best for this caregiver
Wendy Stevens of Toronto describes herself as “an optimist, organized, practical and a problem-solver.” These traits have served her well at work and at home, as mother of two sons, 28 and 33, and wife to Victor.
Her younger son is autistic with intellectual disabilities and lives at home. Her older son is married, he and his wife are expecting their first child this summer.
When Victor was diagnosed with IPF (idiopathic pulmonary fibrosis) in 2017, he was 57 years old. “We were in shock,” she says, “and when we read the terrible information online about most people only living a few years with this disease, it was devastating. I thought about all the things he would miss, like our son getting married and having grandchildren.”
Victor was referred quickly to the ILD Clinic at Toronto General Hospital and began treatment with the anti-fibrotic nintedanib (Ofev) right away. In problem-solver mode, Wendy went to Victor’s appointments with him and learned all she could.
Kerry and Bill Ferguson’s journey with PF
In this heartfelt video, Kerry Ferguson shares her journey in memory of her late husband, Bill Ferguson, who lived with pulmonary fibrosis (PF). Diagnosed in 2018, Bill faced the challenges of this disease with courage and determination, finding support through a community of others living with PF. Kerry reflects on the symptoms, diagnosis process, and Bill’s use of oxygen therapy, which allowed him to stay active and engaged. Despite the difficulties, their story is one of resilience, love, and hope for the future.
Grieving what was and finding acceptance for what is – Heidi Schollengberg
Heidi Schollengberg is a pastor’s wife, a mother, grandmother, an oncology nurse, still working, and now her husband Brad’s caregiver. With honesty and candour, Heidi shares their journey through a life-changing pulmonary fibrosis diagnosis, medications, support groups, preparing for lung transplantation, and finding joy wherever they can.
CPFF Hope Breathes Here Walks are back — bigger than ever!
The CPFF Hope Breathes Here Walks are back for 2025 — and they’re just around the corner!
This year, we’re walking together coast to coast in 11 cities to raise awareness, support, and hope for everyone affected by pulmonary fibrosis. Whether you’ve walked with us before, or this is your first time, there’s a way for everyone to take part.
- Find a walk near you and join your local PF community
- Walk your own way by joining our virtual walk as an individual
- Start your own community walk and help bring hope to your area. Email us at info@cpff.ca
Community walks kick off on June 28th starting in Edmonton, Alberta. Get registered now.
Everyone walks for their own special reason, but together, our shared journey reminds us we’re stronger side by side. Let’s walk together — and show that Hope Breathes Here©.
Visit p2p.onecause.com/cpffwalks to get started.
Featured Videos
Managing Fatigue and Energy Conservation
Advance Care Planning
Mastering Oxygen: Understanding Equipment and Support for Better Health
Parlez-vous français?
Plus de soutien pour notre communauté francophone
Parlez-vous français?
Rejoignez notre groupe Facebook privé en français, un espace chaleureux conçu spécialement pour les francophones touchés par la fibrose pulmonaire. Échangez avec d’autres personnes qui vivent des expériences similaires, posez vos questions, partagez votre parcours et trouvez du soutien dans votre langue. Nous sommes là pour vous guider vers les bonnes ressources — en français.
Texte du site Web en français
Vous pouvez changer la langue du site sur cpff.ca à l’aide de la barre de langue en haut à droite. Les principales langues parlées au Canada y sont offertes. Vous ne voyez pas la vôtre? Écrivez-nous!
Vidéos et sous-titres en français
Nous avons d’excellents contenus vidéo en français! Il suffit de taper « vidéos en français » dans l’outil de recherche de l’IA sur www.cpff.ca, ou de parcourir la liste ici.
Vous pouvez aussi activer les sous-titres en français pour toutes nos vidéos en anglais.
Échangez avec d’autres personnes qui vivent des expériences similaires, posez vos questions, partagez votre parcours et trouvez du soutien dans votre langue.