May 2024

Please help us help you. Take the survey

Every two years the Canadian Pulmonary Fibrosis Foundation asks patients and caregivers to describe their experiences living with PF, the impact on their lives, and their future needs.

CPFF uses these insights to plan the programs and resources you need, as well as support our advocacy initiatives for improved and equitable access to health care such as medications and oxygen therapy.

The survey takes about 15 minutes to complete. Please take the survey now.

Respiratory researchers share their findings

CPFF Executive Director Sharon Lee, left with current Robert Davidson fellow Kirsten Nesset and CPFF Board Chair Todd Georgieff at the Canadian Respiratory Conference in Toronto, April 11 to 13. The conference was an excellent opportunity for CPFF to connect with respiratory health care professionals.

Representatives of CPFF attended the 2024 Canadian Respiratory Conference in Toronto, hosted by the Canadian Thoracic Society, April 11 to 13. “We were pleased to meet with many of our current and former Robert Davidson fellows and research grant recipients, who were there as delegates, presenters and sharing research posters at the conference,” reports Sharon Lee, CPFF’s Executive Director.

More than 55 experts delivered sessions on a vast array of research, covering a variety of respiratory diseases, such as COVID-19, asthma, COPD and ILD. There were also close to 100 research posters on display.

Although the presentations were not recorded and were geared to respiratory health care professionals, we gathered a few highlights for the seven presentations we attended that may interest you (see list below). Read detailed highlights.

More than 55 experts delivered sessions on a vast array of research at the 2024 Canadian Respiratory Conference in Toronto

Beyond the Guidelines: Overview of Hypersensitivity Pneumonitis, Systemic Sclerosis Associated Interstitial Lund Disease (SSc-ILD) and Progressive Pulmonary Fibrosis (3 sessions)

  • Dr. Julie Morisset, Center Hospitalier de l’Université de Montréal
  • Dr. Martin Kolb, Professor; Director, Division of Respirology, Jack Gauldie Boehringer Ingelheim Chair in Interstitial Lung Disease; Research Director, Firestone Institute for Respiratory Health
  • Dr. Daniel Marinescu, University of British Columbia

Advancing Early Diagnosis and Management of IDL and IPF: A Path to Better Patient Outcomes (1 session)

  • Dr. Deborah Assayag, Assistant Professor, McGill University

COVID 19 Beyond the Initial Illness: Impact, Function and Imaging

  • Dr. Andrea Gershon, Sunnybrook Health Sciences Centre, Toronto 
  • Dr. Tania Janaudis-Ferreira, PhD. Associate Professor, McGill University
  • Dr. Grace Parraga, PhD. Lung Imaging Scientist, University of Western Ontario

Read more

New videos and French resources

Take some time to check out these new educational and inspirational videos:

Respirologists Dr. Charlene Fell, Dr. Deborah Assayag, and Dr. Amanda Grant-Orser discuss the vital role of oxygen therapy and the need for equal access across the country in this video.

David Langlais provides an overview of his research which investigates the underlying causes of pulmonary fibrosis.

Dr. Amanda Grant-Orser discusses the impact of CPFF Robert Davidson fellowships on improving patient care and quality of life in this video.

We have also translated three more CPFF resources into French:

Moving ahead on oxygen access in Ontario

CPFF’s Executive Director Sharon Lee met with Ontario MPP Logan Kanpathy, along with other MPPs and their staff, at a gathering at Queen’s Park last month.  

The Canadian Pulmonary Fibrosis Foundation (CPFF) is pleased to report that a follow-up  Independent Exercise Assessment (IEA) for oxygen is no longer required after nine months in Ontario. In addition, the IEA is now based on time and not distance, (unlike the six-minute walk test).

This should enable more patients to qualify for exertional oxygen therapy, improving the patient’s ability to participate in daily activities for longer periods of time. The change was made to the Policy and Administration Manual of the Assistive Devices Program and came into effect on April 1, 2024.

CPFF Executive Director Sharon Lee met last month with Ontario MPP Logan Kanapathy from Markham-Thornhill, along with other MPPs and their staff at a gathering at Queen’s Park in Toronto. Sharon was able to discuss CPFF’s oxygen reports and their recommendations, with several individuals.

Sharon Lee has also been invited to appear before the Standing Committee on Finance and Economic Affairs regarding Bill 180, the Building a Better Ontario Act, to share our recommendations to remove barriers faced by people trying to access oxygen therapy and to cover the cost of supplemental oxygen for anyone who requires it. 

Mark your calendar today

Participants gather in the barnyard of Avonmore Berry Farm before the Run for the Farm for PF last August in Avonmore, Ontario.

It won’t be long before your summer calendar starts to fill up with family events and community activities. So, take a moment today to save the date for one of the Canadian Pulmonary Fibrosis Foundation’s community walks in support of our Pulmonary Fibrosis Awareness Campaign in August and September.

  • August 17, Avonmore Berry Farm – Run the Farm for PF, Avonmore, Ontario
  • August 24, Winnipeg, Manitoba – New this year
  • September 14, Clarke Walk for PF, Calgary, Alberta
  • September 14, Saskatoon, Saskatchewan – New this year
  • September 21, Robert Davidson Walk for PF, Markham, Ontario
  • September 28, Khan Family Walk for PF, Montreal, Quebec

We’ll send you reminders on our social media platforms and in this newsletter as details are confirmed and registrations become available. Check out our photo gallery online to catch a glimpse of last year’s community walks.

Fundraise your way for PF

Summer gatherings can become great fundraisers for PF. Our DIY Fundraiser Guide makes it easy.

Summer is a time for gathering with friends and family, especially outdoors. BBQs and parties to celebrate birthdays, anniversaries, family reunions and graduations, or smaller events like your book club meeting or a yoga night. We’ve got everything you need to make your day or event a way to fundraise your way. It’s as easy as 1-2-3.

You can pledge a special day and let others know they can celebrate your birthday, for instance, by making a donation to CPFF. Or when you send out invitations to an event, people can make a donation when they RSVP.

Our DIY fundraiser guide walks you step by step through planning, setting up your fundraising page and promoting your page. Don’t be shy about asking your friends and colleagues to make a donation. It’s for a great cause.