February 2024

CPFF has a new chairperson

The Canadian Pulmonary Fibrosis Foundation (CPFF) is pleased to announce the appointment of Todd Georgieff as Chair of its Board of Directors during the CPFF Annual General Meeting held on January 26, 2024 in Toronto, Ontario.

You can find out more about Mr. Georgieff, and our other Board members on our website. Our former Board Chair Kirk Morrison will remain on the Board as a director. Ranjena Maloni, of Mississauga has resigned as a Board member, after six years. Todd thanked both Kirk and Ranjena for their exemplary service to CPFF and the PF Community.

In the coming months, CPFF will be recruiting new Board members, as well as volunteers to serve on Board committees, which make recommendations to the Board. 

Together, we are making an impact

With your support, energy, and dedication, the Canadian Pulmonary Fibrosis Foundation (CPFF) was able to deliver measurable differences in support for patients and caregivers, awareness and education, research, and advocacy,  for the pulmonary fibrosis community in Canada. Read the highlights in our Impact Report Highlights 2022-23.

“I’m so proud of all we’ve been able to accomplish together,” says Sharon Lee, Executive Director, CPFF. “And our thanks go out to everyone who made a contribution, by holding an event, getting the word out, volunteering or making a donation.”

Here are just a few of the noteworthy ways we made an impact this past year:

• In the area of patient and caregiver support, thousands of people affected by pulmonary fibrosis were connecting, learning, and being supported through CPFF resources on our website, our 23 support groups, our digital platforms (including 4,300 Facebook members), and community events. Learn more about our impact.
• Awareness campaigns educated Canadians and drove significant interactions with PF-related materials. We’ve added 42 educational videos and 277 educational resources to our website. Find out more about how we’ve increased awareness and are educating people about PF.
• CPFF’s investment in research has more than doubled over the last five years. Learn about questions being addressed by researchers.
• On the advocacy front, CPFF has helped improve drug access and our Oxygen Access reports are receiving significant media attention, public interest and community engagement. Find out more about the impact of our advocacy efforts.

Rare Disease Day is February 29

The Canadian Pulmonary Fibrosis Foundation (CPFF) will be joining forces with organizations around the world, such as EU-PFF (European Pulmonary Fibrosis Federation) and the UK-based Action for Pulmonary Fibrosis, as well as CORD (Canadian Organization for Rare Disorders) in Canada, to focus attention on people living with rare diseases, including pulmonary fibrosis.

Our Rare Disease campaign will begin on Rare Disease Day and extend throughout March. Be sure to visit www.cpff.ca on February 29 to see how you can help increase awareness of the challenges facing our community. We’ll send you a reminder email and we’ll be reaching out on our social media channels too.

Your mental health deserves attention too

When living with a progressive, chronic illness, dealing with day-to-day reality and caring for your physical health can understandably take over your life. And caring for someone with a chronic illness also takes a toll on your mental health.

Irish psychiatrist Dr. Brendan Kelly, and author of the “Science of Happiness,” makes the case for caring for your overall well-being, in a recent EU-PFF (European Pulmonary Fibrosis Federation) webinar “Living with Lung Fibrosis: Optimising Mental Health and Wellbeing.”

The timing couldn’t better for some tips on pursuing mental wellbeing, as we hunker down in the middle of our Canadian winter, continue to deal with  COVID-19  and other respiratory viruses, and our health care systems struggle to keep up.

Here are a few tips from Dr. Kelly on managing your wellbeing:

1. Connect with others. And ask for help. Doing so benefits both parties, the giver and the receiver. You’ll both feel better.
2. Be active. You don’t have to work out like an athlete or stretch like a yogi. Just do what you can. And if you can do the activity with someone else, all the better. Nothing beats walking.
3. Take notice. Be aware of what is going on around you. In today’s lingo, this is often referred to as mindfulness. But just engage your senses. What do you hear, taste, smell, see and touch as you go about your day?
4. Keep learning. Pursue anything that interests you. Knitting new patterns, trying new recipes, learning a new language, mastering a game. Anything that engages your brain in a positive way.
5. Give. Be kind and caring to others. Supporting others means just being there for them. 
6. Sleep more. If there was a tablet that provided the benefits of sleep, it would be a best seller. Get at least eight hours.
7. Diet. We all know what we should be eating to stay healthy. Do your best and if you can do just one thing, eat more plants.

In short, try to devote as much time to your mental wellbeing, as you do to your physical health. We know today that the two are intertwined. Nurture yourself.

In closing, Dr. Kelly shared the “secret to happiness.” Find the activity that absorbs you the most and do more of it. When you find the time flying by while doing something you enjoy, you enter a “state of flow.” That is happiness.

Maxine Flewett, carer to her husband Ron for more than nine years, is also a speaker on this webinar. She shared her advice for patients and caregivers about mental health. “Ask for help,” she says. “I know it’s difficult, but you can’t do it alone.” She also recommends reaching out to patient organizations for group and individual support. Learn more about Ron’s journey with PF and his experiences using oxygen in a past CPFF webinar.

CPFF has several resources to help with your mental wellbeing:

• Support groups, both local and national, for patients and caregivers.
• Videos: Mental Health: Living Beyond your Diagnosis, with Dr. Elisabeth Saxton
• Coping with Loss and Change, with Kamara Tayo Jones, MSW.
• Get Involved: Volunteering at a CPFF event or support group and helping others is good for you too.

Advocating for improved access to oxygen in Ontario

During the past two months, Sharon Lee, Executive Director, Canadian Pulmonary Fibrosis Foundation (CPFF), made two appearances before the Ontario government: On December 11 to the Standing Committee on Finance and Economic Affairs and on January 29 to the Ministry of Finance. In both instances, she advised the government to make budget provisions to improve access to oxygen for pulmonary fibrosis patients. You can read her remarks here and here.

At the December meeting, she explained the challenges faced by the 12,000 Ontarians living with pulmonary fibrosis and provided CPFF’s recommendations to improve access to oxygen therapy. Some committee members even took the Pucker Up Challenge and learned how difficult breathing can be for people with PF who require supplemental oxygen. 

CPFF was subsequently invited to appear before the Ontario Ministry of Finance on January 29, 2024, during the ministry’s consultations in advance of the 2024 provincial budget. Ms. Lee reiterated CPFF’s recommendations concerning access to oxygen. CPFF is now arranging follow-up meetings with MPPs to further advance these recommendations. 

As part of a national campaign, Ms. Lee will represent CPFF at the Rare Disease Day and 2024 Summit organized by the Canadian Organization for Rare Disorders (CORD) in Ottawa on February 29. While in Ottawa, CPFF will also be meeting with government officials to raise awareness of the challenges and barriers faced by Canadians living with pulmonary fibrosis. 

Resources to help you find a family doctor

There is no doubt that your family doctor (or nurse practitioner) is the gateway to accessing  the health care system in your province or territory. Unfortunately, millions of Canadians do not have a primary care physician. CPFF has gathered some links that may help you to find a family physician, or a walk-in clinic, in your area. Other options for non-emergency healthcare, such as telehealth, are also described on several of the websites noted. 

In addition, here are a few general information links on this topic that may be helpful:

https://globalnews.ca/news/6604759/find-family-doctor/

https://thehealthinsider.ca/how-to-find-a-canadian-family-physician/

Skip the Waiting Room is one way to find walk- in clinics in your area. They have up-to-date schedules, contact information, and let you book appointments online.

Leaving a legacy

You don’t have to be a billionaire like Warren Buffet or Bill Gates to leave a lasting legacy. Robert Davidson, the founder of the Canadian Pulmonary Fibrosis Foundation (CPFF), was a man of modest means who dedicated himself to our cause. Along with his heroic efforts to help others by building CPFF, a bequest in his will has left an enduring legacy.

If you wish to follow in the footsteps of Robert Davidson and leave a meaningful legacy, consider making a bequest to the Canadian Pulmonary Fibrosis Foundation  in your will. To facilitate the process, we have developed two essential documents for your convenience and that of your legal advisor: “Will Bequest Options” and “A Guide to Preparing Your Will.” These resources aim to simplify the steps involved in including CPFF in your will, ensuring your contribution leaves a lasting legacy in the fight against pulmonary fibrosis.

Visit the revamped Donate page on our website to check out other ways to give.  Your support makes all the difference.