Embrace hope this September
There are so many ways to “Embrace Hope” during Pulmonary Fibrosis Awareness Month, from taking the Pucker Up Challenge to participating in a community or virtual walk and from registering for one of our educational webinars or taking part in one of our advocacy initiatives.
It’s your turn to shine a light on pulmonary fibrosis in your community. Whether you’re a patient, caregiver, or passionate advocate, your voice matters. Join us in fostering understanding and empathy. Take action to help raise awareness, hope and funds for people living with PF.
Increasing awareness beyond our PF Community
This year’s Awareness Month initiatives include an ad campaign recognizing the costs of not diagnosing PF early on and identifying that for some, PF can start with:
- A cough that wouldn’t go away
- Shortness of breath when climbing up stairs
- Fatigue they just couldn’t escape.
Called “Early Signs,” this campaign includes two posters found here and here, that you can share through social media or download, print and post in your community at libraries, retail shops, and community/senior centres. Anywhere that will help inform people about PF.
TV ads featuring the Pucker Up Challenge will also be airing on Cottage Life and YES TV channels. Check our event calendar, for dates and times. We’ve also posted a NEW Pucker Up Around the World video.
Take part
Bring your friends, family, neighbours and colleagues and enjoy the outdoors on one of three Community Walks taking place this month:
Clarke Walk for PF. September 9, Calgary, Alberta.
Robert Davidson Walk for PF. September 16, Markham, Ontario.
Khan Family Walk for PF. September 23, Montreal, Quebec.
Be inspired and learn more at the five new webinars we’ve set up:
Oxygen 101. September 6, 1:30 pm – 3:00 pm EDT
Understanding ILD in Rheumatoid Arthritis, Scleroderma and Other Connective Tissue Disorders. September 7 @ 2:00 pm – 3:00 pm EDT
Paralympic Voices of Hope.September 13, 7:00 pm to 8:00 pm EDT
Palliative Care for Interstitial Lung Disease: Exploring Cannabis. September 20, 1:30 pm to 3:00 pm EDT
Advances in Myositis-Associated Lung Disease Treatment. September 27, 1:30 pm – 3:00 pm EDT
Remember that all of our webinars are added to our video library, about a week after they are broadcast, so you can watch them at any time.
Connect and share
We’ve also got a great virtual walk well underway. Join Canadians from coast to coast as we walk, roll, and run across the country. Our goal is to collectively walk across Canada by the end of September 2023. That’s 6,818 kilometers! You can keep track of the kilometres you walk using the CPFF App.
Where did you walk today? Use the CPFF App and share photos of you and your friends, and/or pets as you rack up kilometres on the virtual walk, take part in a community event or do the Pucker Up Challenge. Check out what others have posted on our PF Month Photo Gallery. You’ll also see various landmarks that have been lit up for PF Awareness Month.
Mobile App
We have a special treat for you all month long! Log into the CPFF App daily for check-in videos from community members, experts, and our team! Log into CPFF app from your browser (eventmobi.com/cpff) or download the app for free from the Apple App Store or Google Play.
This year during Pulmonary Fibrosis Awareness Month, celebrate our coming together and Embrace Hope!
Join our advocacy efforts to improve the lives of people with PF
September is Pulmonary Fibrosis Awareness Month and fittingly, CPFF is asking for your help with three advocacy initiatives to educate and influence government policy makers. We’ve done our best to make it as simple as possible for you to participate.
Manitoba election October, 3, 2023
The first initiative involves Manitoba residents writing to the party leaders in the Manitoba provincial election about the needs of those living with PF and their families and using our Manitoba election toolkit to inform candidates in your riding. On our website, you’ll find a sample email message ready for you to send, along with the email addresses of the four party leaders.
Short survey on medication use
The second action involves completing a short, four-question, online survey to help the CPFF prepare a patient-focused submission to a federal government committee on the appropriate use of medications. Please complete our survey by September 22, 2023.
Reach out to your elected official to promote Awareness Month
The third initiative is a reminder to reach out to your MPP/MLA/MNA to encourage them to promote Awareness Month with a short video message. Simply complete the online form to send a request to your elected official.
With careful planning you can travel with PF – even overseas
Just ask Usha Glen who last May spent three weeks travelling with friends and family around the UK and to Bruges, Belgium. Usha, 70, of Thornhill, Ontario, was diagnosed with IPF in 2017 and currently uses oxygen – a portable concentrator – only for exertion.
“My main concerns were the flight to London; what I would do if something went wrong with my concentrator and getting sick while away,” she says. Careful planning and listening to the experiences of others and the advice of her health care professionals, helped her overcome her unease and enjoy a special trip.
CPFF was a great resource. Travel is a topic that often comes up during the National Support Group meetings, which Usha attended. And the CPFF Facebook page let her discuss travel tips with others in the CPFF Community. In addition, CPFF’s Executive Director Sharon Lee, was able to connect Usha with Stephen Jones, the Chair of Action for Pulmonary Fibrosis UK, who she communicated with before her trip.
UK study looking for participants in Canada
Imperial College London is running a qualitative research project (meaning there are no medications to take) to understand people’s views of screening and early treatment in pulmonary fibrosis to help develop an effective screening program. This project is called POSTPF.
You may be able to participate if you:
- Have a diagnosis of pulmonary fibrosis
- Are the first-degree relative (parent, sibling, child) of a person diagnosed with pulmonary fibrosis
- Have participated in screening for lung cancer (called lung health check in the UK)
- Are a healthcare professional working with people with pulmonary fibrosis for three or more years.
The study involves sharing your views in a one-to-one interview (approx. 60 minutes) via remote video call (Teams or Zoom). The discussion will be recorded and transcribed.
This research project is funded by the National Institute for Health and Care Research (NIHR).
If you are interested in taking part or would like more information about this study, please email [email protected]
Hope and Ollie: Know the signs of PF
Like many pulmonary fibrosis (PF) patients, it took some time for Hope to receive a diagnosis of PF. CPFF and our community is always reaching out to build awareness among the public, health care professionals, and governments to help people receive an earlier diagnosis.
An earlier diagnosis means earlier treatment at an earlier stage of the disease and a better quality of life.
Visit the Hope and Ollie webpage to see all of the comic strips published to date. Let us know what you think by sending your feedback to [email protected].