Together we are shining a light on pulmonary fibrosis
A message from Sharon Lee, CPFF Executive Director
Can you feel it? I can. So can the 400 people who turned out for our first two community walks last month. There is a renewed energy in our community, a more hopeful atmosphere, and so many engaged, excited supporters.
With two walks completed, and four more to go, we have already surpassed our goal of $100,000. Individual donations and sponsorships now total $100,564. I think we might reach a new goal of $150,000. If we can do it, it will be our best result ever.
I’m also encouraged to report that we are seeing progress in areas that impact the lives of people living with pulmonary fibrosis. Results from our 2024 Patient and Caregiver Survey Report show that while the timeline from symptoms to diagnosis is still slow, it has shortened, and the number of patients who waited less than a year to be diagnosed is up eight per cent from 2022. (Be sure to join our September 25 webinar to hear research experts share the latest insights from the 2024 survey report.)
I like to think this improvement is a result of our targeted awareness and education campaigns and activities that encourage individuals and health care professionals to “Know the Signs of PF” and to “Tackle the Crackle©.” (See the last article in this issue for more details.)
New Treatments on the Horizon
The best news of all is that after a decade since new treatments were approved, there are new drugs in the pipeline to help patients better manage and treat their PF, giving hope to patients and caregivers for a better future. PF research is on fire!
Several clinical trials are now entering phase three and showing great potential to improve the symptoms of pulmonary fibrosis and further slow, or even halt, the progress of PF and address some of the more debilitating side effects of current medications. Read the update on our website for more details and check out our some of our previous educational webinars.
I know there is still so much to be done to improve your life and those of your loved ones. We can do it. We will continue to support you in every way we can.
United we can shine a light on pulmonary fibrosis – until it disappears.
Appointment of CPFF Fellow will double access to an ILD specialist
When Dr. Kirsten Nesset takes up her new position as an ILD specialist this fall at Kingston Health Sciences Centre in Kingston, Ontario, patient access to an ILD specialist in the large Kingston catchment area will effectively double. She will be joining Dr. Onofre Moran-Mendoza at the centre.
“Improving access to ILD specialists is one of the main goals, along with ILD research, of the CPFF Robert Davidson fellowship program,” says Sharon Lee, Executive Director of the Canadian Pulmonary Fibrosis Foundation (CPFF.)
Dr. Nesset will also hold an academic appointment as an assistant professor at Queen’s University. She’ll be teaching medical students and residents and continuing with her research. Part of that research will be completing the 12-month follow up with patients in her CPFF Fellowship project.
Reaching out to government – for you and by you
The Canadian Pulmonary Fibrosis Foundation (CPFF) continues to connect with government decision-makers on behalf of our PF Community. And, to make it easier for you to tell your representatives what you need.
Walk participants sending their messages to provincial health ministers
At each of the CPFF community walks taking place as part of our PF Awareness Campaign 2024, participants can write their PF message to their provincial health minister on custom post cards, which will then be sent to the various ministers.
With total participation in our walks increasing and two new walks taking place this year, we anticipate a good number of post cards reaching the ministers. This is another way to let our decision-makers know about pulmonary fibrosis and the needs of our Community.
British Columbia, New Brunswick and Saskatchewan go to the polls next month.
Now is the perfect time for voters living in these provinces to reach out to candidates from all parties to increase their awareness of pulmonary fibrosis and the needs of our Community.
CPFF has created election toolkits to help you engage with local candidates and communicate the barriers faced by people living with PF, such as access to supplemental oxygen and pulmonary rehabilitation services.
Download your toolkit here:
British Columbia election, October 19, 2024
New Brunswick election, October 21, 2024
Saskatchewan election, October 28, 2024
Federal government submission
In advance of the 2025 federal budget, CPFF submitted its recommendations to the House of Commons Standing Committee on Finance this past July. Among the recommendations are:
- To improve the lives of people living with PF, and all Canadians, by providing dedicated funding for provincial health authorities to cover the cost of supplemental oxygen.
- National programs such as the Strategy for Drugs for Rare Diseases and National Universal Pharmacare can, and should be, leveraged to achieve this goal.
CPFF supporters are encouraged to email a copy of the pre-budget submission to their Member of Parliament. To do so, please visit the Parliament of Canada website to search for your MP’s contact details.
Read the full submission, under July 2024.
Coming together for pulmonary fibrosis awareness
“My heart is full. For the first time in 9 years, our family doesn’t feel alone. Thank you to the organizers! Can’t wait for next year!
Comment from a Winnipeg Walk for PF participant
This is just one example of how our 2024 Awareness Campaign is uniting people to shine a light on pulmonary fibrosis. At publication, more than 570 individuals have registered to take part in one of the six community walks taking place across the country and more than $100,000 in individual donations and sponsorships have been raised.
“To surpass our $100,000 goal this early in the campaign, it would be great to challenge ourselves to reach a goal of $150,000,” says Sharon Lee, Executive Director of the Canadian Pulmonary Fibrosis Foundation. “If we make it, it would be the most we’ve ever raised during our Awareness Campaign and quite a feat during these uncertain financial times.”
Funds raised are used for the creation of much needed support resources, advocacy initiatives, awareness activities to help with earlier diagnosis, and research into better treatments and towards a cure.
Community Walks for PF
Avonmore Berry Farm – Run the Farm for PF
Despite a rainy day, sunny vibes prevailed as more than 85 people participated for the Run the Farm for PF event at the Avonmore Berry Farm in Ontario and raised more than $18,000. Click here to donate to this event until the end of September.
Watch these newly released videos and get to know some of Avonmore’s PF community:
CPFF Walk for PF – Winnipeg
More than 300 people took a walk in Assiniboine Park on August 24, in support of pulmonary fibrosis on a glorious sunny day. The inaugural Winnipeg CPFF Walk, supported by a generous crew of Winnipeg volunteers, raised more than $36,000. Click here to donate to this event until the end of September.
We’ve still got four Community Walks to come.
It’s not too late to register for one of these family-friendly events in Calgary, Saskatoon, Markham, or Montreal. There’s also a virtual walk for those who want to contribute, but don’t live near a community walk event.
PF Awareness Campaign Activities – September
From educational webinars, to online support groups, meetups, and monument lightings, check out all the activities and ways you can get involved this September in the Pulmonary Fibrosis Awareness Campaign.
Shine your light on pulmonary fibrosis!
The Canadian Pulmonary Fibrosis Foundation is uniting Canadians once again to shine a light on pulmonary fibrosis (PF), a debilitating and incurable lung disease.
Tune in as communities share their insights, experiences, and hopes for people living with PF. Watch and share this video. What would you like to #shineyourlight on? Share your PF stories with us here or to your network on social media. Don’t forget to tag CPFF.
Get moving and Pucker Up for PF
You spoke. We listened! You asked us to show the world how movement can put on strain on breathing for everyday activities. CPFF has updated the Pucker Up Challenge to encourage people to move while breathing through a straw to see what it feels like to live with shortness of breath that progressively worsens with movement.
Tune in as Canadians get moving with the CPFF Pucker Up Challenge. Grab a drinking straw.
- Pucker up
- Breathe
If you care for someone living with PF take the Pucker Up Challenge. Nominate a friend and share on social media #puckerupchallenge
Be sure to follow us on our social media platforms, where we’ll be adding videos, photos and event reminders throughout September. And check our community walk photo gallery and our video library regularly as we’ll be adding more videos throughout September.
There’s always more to learn… and cook
As part of CPFF’s 2024 awareness campaign, we’ve got some fun and informative webinars lined up for you. You can find them all on our events calendar on our website www.cpff.ca.
- Sept 3, 1 p.m. EDT: If you missed this live webinar, check our video library next week for an overview of Pliant Therapeutics BEACON-IPF global clinical trial, which aims to find out whether bexotegrast slows down or halts idiopathic pulmonary fibrosis disease progression over a 52-week treatment period. If you have IPF, you’ll also find out if you could be a candidate for this clinical trial.
- Sept 9, 1 p.m. EDT: Cook with Tracey Reed. Join holistic nutritional consultant Tracey Reed as she creates a nutritious, anti-inflammatory, easy-to-make meal that your whole family will enjoy.
- Sept 16, 1 p.m. EDT: Bake with Tracey Reed. Join Tracey Reed as she creates a delicious, lung-friendly, easy-to-make dessert that will have your family asking for more.
- Sept 25, 7 p.m. EDT: 2024 CPFF Patient & Caregiver Survey Report. Here’s your opportunity to find out the results of our spring 2024 patient and caregiver survey. Join research experts from Pearl Communications as they share the latest insights from the survey.
- Oct 2, 1 p.m. EDT: Managing Medication Side Effects Through Nutrition. Get practical tips on using nutrition to manage common medication side effects like nausea, vomiting, reflux/heartburn, diarrhea and more.
Listen for the signs of PF
Pulmonary fibrosis (PF) is a rare disease, so it is not often top of mind when people are experiencing early symptoms:
- Persistent cough that won’t go away after more than three months
- Shortness of breath after physical activity that was typically not a problem
- Ongoing fatigue, weight loss
Early detection is crucial for prompt intervention, which can change the trajectory of the disease since once fibrosis has scarred the lungs, the damage is irreversible.
We’ve conducted several awareness campaigns to educate the public and health care professionals about the early signs of PF and to aid in earlier diagnosis. They seem to be having an impact. Eight per cent more 2024 survey respondents reported getting a PF diagnosis in less than a year, than respondents to our 2022 survey.
Check out our “Listen to the signs of PF” video (in English and French), as well as the “Tackle the Crackle©” public service announcement. Dr. Deborah Assayag, Dr. Amanda Grant-Orser, and Dr. Charlene Fell educate viewers on how to listen for the signs of early pulmonary fibrosis symptoms and when to ask your doctor to tackle the tell-tale lung crackles. You can find them now in our video library.
We’ll be releasing more “Tackle the Crackle©” videos and patient story videos throughout September, so check our video library regularly and stay tuned on social media for notifications of new releases.