CPFF Robert Davidson Fellowships fill a gap in ILD care
A recent graduate of CPFF’s Robert Davidson Fellowship, Amanda Grant-Orser, told the CPFF Board during a presentation in June, that the CPFF fellowships provide a structure for ILD clinical practice and research that is not available in any Canadian residency training program.
“The research we do as CPFF fellows provides a national unity of ILD scholarship; builds a strong ILD community; and enables more physicians to become ILD specialists in more places across the country, increasing access to specialized patient care,” she explained. “In addition, it can be helpful on future grant applications, depending on their points system.”
During her presentation she also summarized three research studies and other endeavours she completed during her two-year fellowship. Her research includes: a study to understand stakeholders’ interests and concerns about genetic testing for ILD; a research summary of the current literature on pregnancy and ILD; and a study investigating whether patients and clinicians perceive clinical status the same, and explore if patients prefer in-person or telemedicine visits.
Embrace Hope this September
September is Pulmonary Fibrosis Awareness Month and we’ve got a full slate of activities and events that you can take part in, watch, support and promote to spread the word about pulmonary fibrosis and raise funds. Participating in one, a few, or all, will help you embrace hope today and for the future. Here are just some of what we’ve got in store for you.
Five webinars to educate and inspire you:
Oxygen 101 September 6, 1:30 pm – 3:00 pm EDT
During this presentation, representatives from VitalAire will explain different oxygen equipment and their uses, as well as answer any questions you may have about them.
Understanding ILD in Rheumatoid Arthritis, Scleroderma and Other Connective Tissue Disorders. September 7, 2:00 pm – 3:00 pm EDT
Dr. Janet Pope will let us know everything we need to know about interstitial lung disease in rheumatoid arthritis, scleroderma and other connective tissue diseases.
Paralympic Voices of Hope.September 13, 7:00 p.m. to 8:00 p.m. EDT
In this webinar, you will hear from Paralympians Brianna Hennessy, Candice Combdon, and Jessica Lewis, each of whom overcame life-altering physical and emotional challenges. Join us as they share their journeys and inspire hope.
Palliative Care for Interstitial Lung Disease: Exploring Cannabis. September 20, 1:30 pm – 3:00 pm EDT
Dr. Rebecca Colman will be presenting on palliative care and symptom management in ILD with the role of cannabis to alleviate symptoms.
Advances in Myositis-Associated Lung Disease Treatment. September 27, 1:30 pm – 3:00 pm EDT
Dr. Shane Shapera will present on the advances in myositis-associated lung disease treatment.
Four in-person walks and our CPFF virtual walk
Avonmore Berry Farm – Run the Farm (for PF). August 12, Avonmore, Ontario.
CPFF Virtual Walk, Roll, Run. All month long. 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.
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.
CPFF App
Stay informed about Awareness Month activities and events and track your kilometres, using the CPFF App. Available for free from the Apple App store, and Google Play, or log in from your web browser.
Ask your elected representative to promote Awareness Month
Your elected representatives have large audiences. To help get the word out about pulmonary fibrosis and CPFF’s 2023 Awareness Month, contact your elected representatives and encourage them to promote PF Awareness Month this September.
Ask them to show their support by recording a short video message to be shared with your community. Help us build awareness and secure more equitable healthcare access for people living with PF.
We’ve prepared a ready-to-go email message which makes contacting your provincial or territorial representative easy. You do not even need to look up their name or email. Just complete the online form and send it.
On the local level, you can ask your mayor and/or Council to proclaim September to be Pulmonary Fibrosis Awareness Month. We’ve provided you with a sample request letter and a sample proclamation. Ask them to read the proclamation, or their own message, in a video. Or, ask them to take the Pucker Up Challenge. If you make one of these local requests, please send a copy of your email to [email protected], to help prevent duplications.
Other Advocacy Initiatives
Want to know what else we’re asking for from governments? Check out the Recent Contacts webpage, where we share CPFF’s government relations activities.
Patients and caregivers increase awareness by sharing their stories
You are not alone. Read or watch many NEW stories submitted by patients and caregivers in our PF community. Through these real and inspiring stories you’ll learn how others cope with the disease or lessons they’ve learned while living and caring for family members with pulmonary fibrosis (PF).
Everyone agrees that first-hand accounts help those living with the disease to feel less alone, and those who do not have PF to understand what it’s like to have the disease.
In one video, CPFF Board member Todd Georgieff, who lost his father-in-law to the disease, talks about the importance of oxygen therapy, and getting it quickly once it is prescribed. He also discusses how PF awareness can help with an early diagnosis for huge impact. An early diagnosis means treatments that slow the progression of the disease can begin sooner to help stabilize patients at an earlier stage.
Find out from Todd what the Canadian Pulmonary Fibrosis Foundation is doing to address the issues of equitable access to oxygen and earlier diagnosis.
Submit your own story and help us all embrace hope during Pulmonary Fibrosis Awareness Month this September.
Check out these new online resources
Lung transplant journeys. A video with transplant recipients Brenda Reynolds, Mark Ashcroft and his wife, Maxine.
Update from Dale Smith. Dale Smith shared his story in writing earlier this year when he was awaiting a transplant. This is an update to his PF journey.
Fibroneer-IPF: A Phase 3 Clinical Trial. A video presentation with Dr. Donald Zoz MD, senior clinical program leader at Boehringer Ingelheim, provides some insight into FIBRONEER-IPF, a Phase 3 Clinical Trial. This trial is still seeking participants with PF other than IPF.
New resources for caregivers. We’ve added several new links to this web page with a vast array of resources for caregivers. You might also want to join our caregivers support group, held virtually every two weeks. Check out our Events calendar for dates and to register.
Oxygen Therapy, Clinical Best Practice Guideline. Published in April 2022 by the College of Respiratory Therapists of Ontario.
Dr. Lee Fidler’s research paper: “Rheumatoid arthritis associated interstitial lung disease: Trends in epidemiology and mortality in Ontario from 2000 to 2018,” was published in the journal Respiratory Medicine, May 2023. This work was funded with a CPFF research grant and is described in article 4 of the June 2022 issue of this newsletter.
Diversity, Equity, and Inclusion in Clinical Research – Roundtable. This video features CPFF Executive Director Sharon Lee as a participant.
Hope and Ollie: Eating right for PF and pacing yourself
Visit the Hope and Ollie webpage to see all of the comic strips so far. Let us know what you think by sending your feedback to [email protected].
