“Robert would be so proud”
A message from Heather Davidson, wife of CPFF’s late founder Robert Davidson
It is so heartwarming to see all the awareness walks across the country this year. When Robert started the Canadian Pulmonary Fibrosis Foundation in 2009 his dream was to fundraise for research and support others who suffered from pulmonary fibrosis. He spent many hours on the phone talking to patients and getting donations, not to mention organizing galas and golf tournaments.
Back then there was no medication to treat the disease. Today there are two drugs that slow the progress of pulmonary fibrosis and promising clinical trials going on for better drugs to slow, or even halt, the progress of the disease. (See article 3 in this issue.)
When Robert was diagnosed there was no support group in Canada. Today there are 25! The Facebook group is amazing and I know so many people are glad to be able to access support from others with PF as they go through this difficult journey. It’s so important that they know they are not alone.
Robert would be so proud to see how much the Foundation has grown and how much has been achieved. Not only funding research and establishing support groups, but giving hope to so many people with all the information on the website. Truly, this was what he looked for back in 2007 when he was diagnosed. His dream has come true and is ongoing.
It makes me very happy to see all that is the Canadian Pulmonary Fibrosis Foundation now. There is a wealth of information on the website, not only for patients and caregivers, but also for the medical community.
I would like to thank all those involved in the CPFF since it began in 2009 and also the communities across Canada that support and donate so that we can continue with this vital work.
October 7 is the deadline for walk pledges and donations
Last Saturday’s community walk in Montreal marked the end of our walks during our PF Awareness Campaign for 2024. In all, six community walks were held, along with our virtual walk and individual walk events.
Our heartfelt thanks go to everyone who participated, supported, or volunteered at these events. In our next issue, we’ll publish a round up and some campaign results. In the meantime, make sure you have your pledges and donations in by the deadline of October 7.
And, if you’ve got photos from your walk, please share them here.
Promising new anti-fibrotic drug proceeding to next phase of clinical trials
BEACON-IPF is a global clinical trial being conducted by Pliant Therapeutics to further evaluate the safety and efficacy of bexotegrast for the treatment of idiopathic pulmonary fibrosis. You may be eligible to participate in this clinical trial, which is now recruiting patients at five sites in Canada.
Dr Greg Cosgrove, vice president of clinical development at Pliant Therapeutics, is the featured speaker in a video of his CPFF webinar, September 3, 2024, which describes how bexotegrast works, earlier clinical trial results, and information about the latest clinical trial.
An earlier clinical trial of bexotegrast involving 119 adults with IPF at 39 sites in North America, Europe, New Zealand and Australia, showed a favorable safety and tolerability profile, up to 12 weeks for the doses studied. Early analyses suggested an antifibrotic effect according to FVC, quantitative HRCT imaging, and fibrosis biomarkers. Compared to those that received placebo, participants that received bexotegrast had a slower decline in lung function (FVC). This effect was observed in participants regardless of whether or not they were also taking another antifibrotic. Importantly, of those that received the highest dose of bexotegrast (320mg) and had an increase in FVC at week 12, 89 per cent maintained that increase to week 24.
The BEACON-IPF trial aims to find out whether bexotegrast slows down, or even halts, IPF progression during a 52-week treatment period by reducing scar formation of the lungs. The study will also assess what effects bexotegrast has on participants’ lung function and quality of life. This latest clinical trial will involve more participants over a longer treatment period.
What is involved in the BEACON-IPF clinical trial?
- Two of every three participants will take bexotegrast (by mouth once a day.)
- The total duration of participation is approximately one year.
- Participants will be asked to attend eight study site visits during the treatment period.
- During each study site visit, the doctor will assess the participant’s overall health and conduct tests.
- Resources to support participants may include reimbursement for travel expenses and food.
You may be eligible to participate in BEACON-IPF
- 40 years of age or older
- Current diagnosis of IPF, diagnosed within the last seven years
- On, or off, other anti-fibrotic medications (pirfenidone or nintedanib)
For more information on participating in BEACON-IPF, contact Pliant at:
Improving awareness among our elected officials
Municipal, provincial and federal government representatives have attended several of our community walks during our fall awareness campaign. We’ve seen them at our Calgary and Markham events. If you know of elected officials that have attended your community walk, please let us know, so we can reach out to them going forward. Send their name, and riding if possible, to [email protected].
A reminder to reach out to candidates this month in B.C., N.B. and Saskatchewan
If you live in B.C., N.B. or Saskatchewan, please take the time to reach out to your local candidates and let them know what people living with PF in your province need from them.
Download your toolkit here:
British Columbia election, October 19, 2024
New Brunswick election, October 21, 2024
Saskatchewan election, October 28, 2024
Thank you for reaching out
Thank you to everyone who shared their recommendations through our advocacy postcards at the PF community walks. We are compiling the information and sharing it directly with provincial health officials.
Wholesome and simple fall recipes everyone will love!
“With her warm smile, and “I’m just here to help you” attitude, spending an hour watching one of holistic nutritionist Tracey Reed’s videos is a relaxed, educational, and fun experience. And, if you cook or bake along with her, you’ve got some guilt-free sweet treats, or a hearty stew to enjoy by the end of the show.
Tracey welcomes you into her own kitchen and shows you step-by-step how to cook a simple, nutritious, stew. It’s also delicious! Meat, or plant-based, this stew is the perfect comfort food as we head into fall.
And the recipe is very versatile. Can’t find parsnips in your grocery store? Use another root vegetable. Don’t want to cook and chop squash? Use frozen. Tracey shares so many tips to make cooking easier for those living with chronic illness and wanting to maximize good nutrition. This stew makes plenty and freezes well. Just reheat a serving when you’re have a “low” day.
While it’s often said that “Cooking is an art and baking is a science,” Tracey’s three-ingredient cookie recipe is super flexible and forgiving. Fast and easy, she shows you three variations and suggests many more. You can almost smell and taste them: lemon poppyseed, macadamia nut and white chocolate chips, and a ginger, nut-free version using sunflower seed butter. She even shows you how to replace eggs if you eat vegan.
Perfect with a cup of tea mid-afternoon, or anytime you feel the need for a sweet treat. Divide the basic dough in two and make two variations in one baking session. Tracey also has some great suggestions for holiday versions: pumpkin pie spice and raisins or dried cranberries and pistachios.
Insights give rise to action following your survey responses in 2024
As CPFF Executive Director Sharon Lee asserts: “We never assume what people want, we actively ask them what they need from us, and do our best to deliver.”
Sharon joins research experts from Pearl Communications in a video presentation from September 25, as they deliver the highlights of the results of CPFF’s 2024 patient and caregiver survey completed this summer.
During the brief overview of the survey results (35 minutes), Ms. Lee offers several examples of how CPFF is addressing the concerns raised by the survey results. For instance, while the time from symptom recognition to diagnosis is getting shorter, diagnosis still takes longer than a year for more than half of patients. CPFF is addressing this gap with “Know the Signs” and “Tackle the Crackle©” awareness campaigns, to further decrease the time to diagnosis.
You can read the full 2024 Breath of Hope; 2024 Patient and Caregiver Survey report, or watch the video of the survey highlights.
Health care professionals are helping build awareness
The Canadian Pulmonary Fibrosis Foundation launched a global “Tackle the Crackle©” initiative aimed at educating medical professionals and the general public about the early signs of pulmonary fibrosis (PF). Respirologists, researchers, ILD nurses, respiratory technicians, pharma industry representatives, and other healthcare professionals across Canada are stepping up to shine the light on pulmonary fibrosis in support of PF patients and their caregivers.
You can watch many of them giving informative presentations, at any time, at home, by visiting our video library. Some are showing up at CPFF community walks, or show their support by wearing CPFF t-shirts during awareness campaigns. Lots of them participate in the Pucker Up Challenge.
It’s no accident that more health care professionals are becoming more involved with CPFF. “We are meeting them at their professional conferences, online and in various industry meetings both across Canada and around the world,” says Executive Director Sharon Lee. We tell them about CPFF’s excellent resources that they can share with their colleagues and with their patients.
“It is to everyone’s benefit that we work together, whenever possible, to improve the lives of people living with pulmonary fibrosis,” says Ms. Lee. “We are incredibly grateful to all of the health care professionals who are working with us to make this happen.”
Editor’s Note: It’s interesting that the medical community is investigating the “crackle” sound in the lungs as a screening tool for IPF. You can read this latest scientific investigation.
Every PF journey is personal
We are honoured to share with you the personal journeys of those living with PF and their families, in the hope that their stories help and inspire you.
We have two, new, short videos for you to watch:
Karen Wade tells viewers about her early symptoms, a health crisis leading to her eventual diagnosis and how she lives now with PF.
Jennifer and Bill Clements recount the journey of Jennifer’s late father, Roy Alderice, who needed the time to process the diagnosis, so kept it to himself for some time, while he intensely researched his condition. They share their advice on advocating for yourself and connecting with others in the same situation for support.
Newly released French videos
We are pleased to be able to continue to provide resources in French. The following are recently released French videos:
Le parcours de Karen Wade avec la fibrose pulmonaire
Le parcours de la famille Schuler avec la fibrose pulmonaire
Le parcours de la famille Phillips avec la fibrose pulmonaire
COVID-19 et fibrose pulmonaire : connaître les signes de la FP – Farrell Eckman
Symptômes de la fibrose pulmonaire : écoutez les signes.
A reminder: Many resources now available online in several languages
Google Translate is now available on www.cpff.ca. Check out the drop-down menu in the top right corner of the screen. Languages available include most of the top 10 languages used in Canada, as well as Japanese, Polish, Greek, Hindi, Korean and Persian. Let us know if there is another language that you’d like to see and we will try to include it in the future.
The translations only apply to written text and exclude images, video, and buttons. Some of these items are already available in French and others may be added a later date.
CPFF video library: View video captions in other languages
You can view captions for our vast video collection in other languages too! See instructions below.
