CPFF proud to advocate for patients at global medical conference
A message from Sharon Lee, CPFF Executive Director
Last month, our Board Chair Todd Georgieff and I had the opportunity to attend the American Thoracic Society (ATS) Conference — a global gathering of clinicians, researchers, industry leaders and patient advocates to advance respiratory care.
While there, we met with several pharmaceutical companies, including Avalyn, AbbVie, Endeavor, and Bristol Myers Squibb (BMS), to learn more about their latest research and development efforts. These discussions focused on promising therapies targeting chronic cough and new treatments aimed at slowing — or even one day halting — the progression of pulmonary fibrosis.
We also attended the presentation by Boehringer Ingelheim on their investigational therapy, nerandomilast, which met its primary endpoint in the Phase III FIBRONEER-ILD study in progressive pulmonary fibrosis (PPF). The results offer a promising glimpse into the future of treatment options for patients. We look forward to sharing the results with you in an upcoming expert webinar.
It was encouraging to see momentum building in the field of ILD research and the strong commitment from industry partners to address the unmet needs of those living with pulmonary fibrosis. Todd and I were proud to represent the Canadian Pulmonary Fibrosis Foundation at ATS and to ensure that the patient voice remains front and center in research, innovation, and access.
Spread the word about Hope Breathes Here Walks
“It’s all about raising awareness of pulmonary fibrosis and the Canadian Pulmonary Fibrosis Foundation,” says Board member Waldo Maticorena. He’ll be at Edmonton’s inaugural Walk, on June 28 in Wilfrid Laurier Park. Mr. Maticorena lost his mother to PF in 2022. He wishes his family had known about CPFF when she was ill.
“We need to spread the word that CPFF is here to help patients and their families with information and support, and so much more,” – Waldo Maticorena, CPFF Board member
“We need to spread the word that CPFF is here to help patients and their families with information and support, and so much more,” he says.
Another great way to spread the word this year, is by wearing one of our 2025 Tackle the Crackle© t-shirts or a CPFF cap. Order yours today from the CPFF Shop for pick up at a Walk location.
Now is also the time to light up Canada in red and blue. Reach out to your municipal officials and ask them to light up local landmarks (bridges, city signs, towers, etc.) in red and blue and proclaim September as Pulmonary Fibrosis month. We’ve got a sample proclamation request letter and proclamation prepared for you.
Register now for one of our Hope Breathes Here Walks taking place in 11 cities across the country.
Sign up for our first walk in Edmonton on June 28th!
Events
Happening Soon
June
9
7 PM to 8 PM EDT
Caregiver Support Group
June
23
7 PM to 8 PM EDT
Caregiver Support Group
June
28
10 AM to 1 PM MT
Edmonton Walk for PF
July
7
8 PM to 8 PM EDT
Caregiver Support Group
July
15
3 PM to 4 PM EDT
National Patient Support Group
July
21
7 PM to 8 PM EDT
Caregiver Support Group
Aug
5
3PM to 4 PM EDT
National Patient Support Group
Aug
5
7 PM to 8 PM EDT
National Patient Support Group
Improving lung cancer screening for ILD patients
CPFF Robert Davidson Fellow Dr. Yassmin Behzadian is passionate about quality improvement (QI) initiatives, in which even small changes in medical procedures, treatments or systems can have a big impact on the quality of patient care and patient outcomes.
“QI is an area than has not been explored a great deal in ILD,” says Dr. Behzadian. “I’m so pleased to be working with the team at UHN to test a QI initiative looking to improve appropriate lung cancer screening referrals in patients with ILD.”
Unfortunately, patients with ILD are at an increased risk of developing lung cancer. For example, approximately 10 to 20 per cent of patients with IPF will be affected by lung cancer. However, lung cancer screening is currently not routinely recommended for patients with ILD.
Dr. Behzadian and the team at the ILD clinic at Toronto General Hospital (TGH), developed an electronic medical record (EMR) tool – a series of questions – and added it to clinic note templates used by the physicians. Completing the questions should help flag patients who would be eligible for referral to the UHN Ontario Lung Screening Program (OLSP). The aim is to increase the appropriate number of referrals to the lung cancer screening program.
“Preventative health measures, like lung cancer screening, are not always top-of-mind when ILD specialists are meeting with their patients, who are often facing several other issues concerning their ILD symptoms, tests and treatment,” says Dr. Behzadian. “Adding this tool at the end of their notes, serves as a reminder to go through the screening criteria to initiate a referral to the lung cancer screening program.”
“Preventative health measures, like lung cancer screening, are not always top-of-mind when ILD specialists are meeting with their patients, who are often facing several other issues concerning their ILD symptoms, tests and treatment,” says Dr. Behzadian
Patient and Caregiver Stories
For this performer, the show must go on
When your life’s work and passion depend on your voice and physical energy, surviving five rounds of tongue cancer treatment and a diagnosis of pulmonary fibrosis can be overwhelming.
Actor, singer, performer, and filmmaker Steven Bidwell, 54, has faced significant challenges and dark moments, but by focusing on the positive and adjusting to his new reality, he’s embracing life with renewed determination and joy.
Between his last two bouts with cancer, Steven received unexpected news. During a medical assessment to join a cruise ship as a performer, doctors informed him that he had pulmonary fibrosis. Steven was shocked. “I had no symptoms at the time,” he says.
During a difficult winter in 2025 marked by weeks of relentless coughing, Steven hit a low point. A trip to the Bahamas in March with friends helped to lift his spirits. “I’ve decided I have to live bigger and better now, because tomorrow isn’t promised. I’m going to live my life, my way, even if it means making a few adjustments.”
Roy Alderice’s PF journey
Jennifer and Bill Clements recount the journey of Jennifer’s late father, Roy Alderice, from the initial diagnosis of pulmonary fibrosis through the progression of the disease. Roy needed the time to process the diagnosis, so kept it to himself for some time, while he intensely researched his condition.
“I think the number one thing is to go and investigate the situation as quickly as possible …if you’re not driving the bus, the bus is driving you and it may not take you to the right place.. go to a doctor, be your own advocate”, says Bill. Jennifer and Bill share their advice on advocating for yourself, allowing family members to support you through your journey, and connecting with others in the same situation for support.
The Schuler family’s journey with pulmonary fibrosis
Hans Schuler’s journey with pulmonary fibrosis (PF) began when a bout of winter pneumonia resulted in a 40-day hospitalization. He was placed on oxygen and was later diagnosed with PF.
In order to support Hans’ wishes and quality of life, Erin and Dan found in-home care, which allowed their dad to stay on the farm, and gave him quality time with his grandchildren. He was a man who persevered, taking on all life’s challenges and never letting them slow him down.
We celebrate Hans Schuler and thank Dan and Erin for sharing their father’s pulmonary fibrosis journey.
Featured Videos
Advance care planning and palliative care
Managing fatigue and conserving energy
Managing stress and coping with loss and change
Des ressources pour notre communauté francophone
Bonjour à tous nos lecteurs et à toutes nos lectrices francophones. On a plein de super ressources pour vous accompagner dans votre parcours avec la fibrose pulmonaire — vidéo éducative, groupe de soutien, groupe Facebook et même une marche à Montréal. Allez jeter un coup d’œil!
Nouvelle vidéo éducative
Tout d’abord, la FCFP a réalisé une vidéo éducative intitulée Le lien entre les maladies du tissu conjonctif et la fibrose pulmonaire dans laquelle la Dre Janet Pope explique de façon claire et accessible le lien essentiel entre ces maladies et la fibrose pulmonaire. Elle aborde les signes précoces, les options de traitement et les mesures à prendre pour mieux gérer votre santé. Regarder la vidéo
Groupe de soutien aux patients en français
Chaque premier lundi du mois, la FCFP tient une rencontre virtuelle du groupe de soutien aux patients en français avec un animateur qui répond aux questions et communique de l’information pertinente. Nous vous invitons à y participer en grand nombre! Sessions à venir
Groupe Facebook privé
La FCFP a également un groupe Facebook privé en français intitulé Canadiens vivant avec la fibrose pulmonaire. Vous devez répondre à quelques questions pour avoir accès à cette page où vous verrez des publications sur les activités et de l’information de la FCFP. Rejoindre le groupe
Marches de la FCFP à Montréal
Chaque année, la FCFP organise des marches dans plusieurs provinces afin de sensibiliser la population à la fibrose pulmonaire. Le 27 septembre prochain, la marche au Québec aura lieu au parc Angrignon, à Montréal. Il s’agit d’une activité qui permet aux gens dans la même situation de se rencontrer et de partager leur expérience ainsi qu’un bon repas. Venez rencontrer les organisateurs de la Fondation et d’autres patients! Joindre l’événement