June 2024

Woman breathing through a straw

Keep on puckering up!

Woman breathing through a straw

We want to thank all the communities who took the Pucker Up Challenge last fall during PF Awareness Month. Check out some of the videos that took place during most of the community walks.

All year round, people from around the world continue to take the Pucker Up Challenge. If you are hosting a summer gathering, bring out some straws and ask your guests to take a moment to feel what it’s like to breathe when you have pulmonary fibrosis. Then share videos of the experience on social media, tag CPFF, and use hashtags #puckerupchallenge and #hopebreatheshere.

Politicians are also taking the challenge thanks to your encouragement, and that of CPFF Executive Director Sharon Lee. They are truly being moved by the effort it takes to breathe with PF. It’s a great way to help build understanding and empathy.

We look forward to seeing lots of puckering up this summer and fall. Because breathing should never be hard work.

Find out the latest about COVID-19 and PF

COVID-19 is still with us and it still poses a risk for people living with pulmonary fibrosis (PF). A large number of COVID patients are also developing pulmonary fibrosis, and although it is not usually progressive, there can be permanent lung scarring. Join former CPFF Fellow and ILD respirologist Daniel Marinescu for a webinar exploring the relationship between COVID-19  and PF. 

The session will be streamed live on June 20 beginning at 6 p.m. EST. You need to register to participate and have the opportunity to ask your questions. As always, this webinar will be recorded and posted in our online Resource Library, under Educational Webinars, within a week after the live session.

Thank you for your participation

Thank you to everyone who completed our 2024 patient and caregiver survey.

We are especially grateful to the more than 500 people in our PF community for taking the time to thoughtfully respond to our 2024 patient and caregiver survey.

Your responses are used to determine CPFF’s priorities for the coming years. We’ll use your insights to inform health professionals, the media, the public and government decision makers on what it’s like to live with pulmonary fibrosis, or to care for someone with the disease – and what you need to improve your quality of life.

Stay tuned for the release of the final survey report this fall during 2024 PF Awareness Campaign. We’ll be encouraging you to share it with your health care professionals, elected officials, local media, as well as friends and family.  

Understanding and alleviating the chronic cough of PF

Coughing is a common symptom of PF, affecting about 80 per cent of patients. For about 25 per cent, coughing can be a very serious and debilitating symptom. The first hurdle in finding relief can often be getting your health care provider to listen to you and address your coughing concerns.

A recent webinar (webinar 6) by the EU-PFF (European Union Pulmonary Fibrosis Federation) may help you convince your doctor that your cough requires something more than sipping water and sucking on mints. The recorded webinar features Professor Surinder Birring, a respiratory physician and cough specialist at King’s College Hospital in London and is hosted by John Solheim, a 58-year-old IPF patient and an EU-PFF board member.

They share an overview of PF cough and various medical treatments (current and in development), as well as some useful non-medical tips that you can try on your own to help you cope with the chronic cough of PF.

Read EU-PFF PF and Cough Webinar Highlights

Disability benefits for people living with PF: You may be eligible

Woman researching on laptop
Check out the Terminal Illness Application for Disability Benefits under CPP to see if you qualify.

Individuals who have a terminal illness, like pulmonary fibrosis, can apply for the Terminal Illness Application for Disability Benefits under the Canada Pension Plan. Quebec residents can apply for a corresponding benefit from their province. You can find the necessary forms on the CPFF website here, under the heading of provincial benefits.

The Terminal Illness Application Kit includes an application for the benefit and a Terminal Illness Medical Attestation form, which has a section that needs to be completed by your physician or nurse practitioner.

Thank you to Dale Howard from our PF community for sharing this information.

Register now for community walks

Before you take off for your summer adventures and visits, take a few minutes to register yourself and/or your team for one of our six, in-person, PF Awareness Campaign community walks this August and September. Then let your social media contacts know how they can support you and our cause.

If you can’t make an in-person event, the CPFF Virtual Walk is the walk for you! Honour a loved one, meet other walkers at virtual meet ups, enjoy a virtual meal, walk t-shirt, and more. Our virtual walk runs throughout the month of September.

You can also pay tribute or honour the memory of a patient or caregiver who is affected by pulmonary fibrosis. Share photos, a brief description of their journey with PF, and what you cherish about this person. CPFF will feature these photos at our community walks.

Light up monuments and ask for PF proclamations

This photo shows the Calgary Tower and the Saddledome lit up in blue and red to promote awareness of pulmonary fibrosis.

Now is the time to make your requests to light up monuments (towers, signs, arenas, bridges, etc.) in your area and ask for proclamations from your local elected officials (municipal and provincial) to promote awareness of pulmonary fibrosis. You can find draft letters for proclamations here.

Requests for lighting and proclamations are usually required to be submitted by local residents, but please let [email protected] know when you have made a request and the response. We can then promote it on the CPFF website and social media platforms.

And when a monument is lit up for September, please take a photo and share it on our photo gallery. The new 2024 photo gallery will be available by August, so you can upload your photo there.

AI-enabled search is here! It’s easier than ever to get your PF questions answered

Check out our AI-powered search function at www.cpff.ca to find the answers to your questions.

CPFF has just launched a new, intelligent search on cpff.ca. Enabled by AI (artificial intelligence), our new search will provide you with significantly better answers to your questions. Unlike traditional search engines that only match key words literally, our AI-enabled search will work to understand the context of your questions leading to more accurate and relevant results. Now you’ll get personalized and precise information, fast.

Give it a try

Click on the magnifying glass icon in the top right corner of any webpage or click ‘ask a question’ from the home page. Simply ask the AI search your question and it will search all the vetted pulmonary fibrosis resources on cpff.ca to give you an answer plus resources.

Are you early on in your PF journey? Ask a question like “I’ve just been diagnosed with pulmonary fibrosis, what’s next?”

Are you looking to learn more about PF treatments? Ask a question like “How is pulmonary fibrosis treated?”

Let us know what you think. Send us a note at [email protected].

Marsha Clyne loves fundraising – and so can you

Marsha Clyne brings a wealth of experience and skills to the new donor coordinator role at CPFF.

The Canadian Pulmonary Fibrosis Foundation (CPFF) is pleased to welcome our new donor coordinator Marsha Clyne. Tech savvy and with a decade of non-profit experience, Marsha will help you make your fundraising ideas a reality.

The donor coordinator 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.

A recent graduate of a Master’s in philanthropy and nonprofit leadership program, Marsha’s experiences have shown her how non-profit organizations can help transform communities one campaign at a time. She may even make a fundraiser out of you!

Beach memories to prompt CPFF donations

A book of memories and photos of the local residents and cottagers of Boulter’s Beach, PEI, will be distributed to participants with a request for donations to CPFF.

In March 2022, Hazel Robinson was diagnosed with stage three breast cancer and underwent a double mastectomy, chemotherapy and radiation treatments. Her husband John was living with idiopathic pulmonary fibrosis (IPF) at the time.

“John was still up and about that summer when I wasn’t, so we were able to support each other with help from our cottage neighbours,” says Hazel.

One of these neighbours looked after their garden. When Hazel asked what they could do for her in return, she requested a history of the cottage community. John and Hazel had previously published two other island history books.

That fall, Hazel contacted former and present summer residents of Boulter’s Beach, PEI, for their memories and photos of time spent at the shore. Together, she and John compiled the 100-plus page book Boulter’s Beach 1930s to 1990, complete with many photos.

Sadly, John Robinson never saw the printed book, which is dedicated to his memory. He passed away at home on November 1, 2023, five years after being diagnosed with IPF, a disease that claimed both his father and uncle.

The book will have its official launch on the evening of July 22nd at the Chocolate Factory in Victoria, PEI. The Chocolate Factory is the former General Store in the village, a beautiful building from the 1800s. A request for donations to the Canadian Pulmonary Fibrosis Foundation will also be made then.

“I am so surprised and pleased with the reception I am receiving from the local people, and the excitement they are showing towards reading about this small summer cottage development,” says Hazel.

“I hope they also respond to our request for donations to CPFF. We must continue to conduct research into better treatments, and eventually find a cure for this terrible disease.”