A message from our outgoing Board Chair
It was six years ago in December 2017, that I met with Robert and Heather Davidson, Barb Barr and George Kaminsky, to talk about joining the CPFF Board of Directors. During those six years, the Canadian Pulmonary Fibrosis Foundation (CPFF) has invested more than a $1 million in research through fellowships and grants; advocated successfully for access to drugs (and advocating now for equitable access to oxygen); raised awareness about pulmonary fibrosis (PF) through our website, media, and September Awareness campaigns; and worked hard to support the PF Community through educational webinars, promotion of support groups, and other initiatives.
While we’ve accomplished a great deal, it isn’t lost on me that of the four people I met in December 2017, three of them (Robert, Barb and George) have passed away because of PF. Over this period of time, we’ve also lost CPFF Directors Stephen Binch and Peter Kleinstiver, as well as countless Canadians, including my Mom, who got me involved with CPFF. We are inspired by all those we have lost, and their families, to press on to find new treatments, and one day a cure, while continuing to support people living with PF today.
To continue to do this work, CPFF has worked hard on “building a foundation for the Foundation,” a phrase coined by past Director Moyra Martin. We’ve recruited a committed, talented and diverse Board of Directors, hired Sharon and Roberto to manage the operations, and developed policies and procedures to ensure operational effectiveness and sustainability. One of these policies promotes Board diversity and succession, and limits Directors to serving three, three-year terms.
Part of good succession planning is for the Board Chair to have a personal plan in place before their term is up. So, it’s time for me to turn the Board Chair position over to Todd Georgieff. Todd has served as a CPFF Director for the past four years, is the current chair of our Governance and Finance Committee, and has been instrumental in developing our communications strategy, our website and the recent oxygen advocacy program. Todd’s been great to work with, and I’m looking forward to him leading our Board as I serve my last three-year term.
It’s been a privilege to serve as Board Chair for the past six years. Thanks to Robert and Heather Davidson for bringing me into the organization that they created; past and present Board members; Sharon, Roberto and our CPFF staff; and to the broader PF community, including the more than 5,000 of you who subscribe to the newsletter. All the best to you and your families over the holidays and I look forward to seeing and working with you in 2024!
Celebrate hope this holiday season
As the world struggles with war and financial stress, and the individuals in our community are challenged by chronic illness, it can be difficult to find joy this holiday season. We hope our holiday offerings help you and your family find some joy, peace and hope this December.
We invite you to pause and reflect upon the blessings in your life each day, from December 1 to December 21, during our 21 days of gratitude challenge. A special calendar prompts you to think about what is right in your world.
During our community walks this past August and September, we asked participants to send Messages of Hope to those impacted by pulmonary fibrosis – patients as well as their caregivers and families. Take a moment to enjoy these messages from our supporters. You are not alone!
Each week in December, CPFF will release messages collected from four different parts of the country, starting with Avonmore, then Calgary, Markham and Montreal and promote them on our social media platforms.
Give others a lift by sharing your own messages of hope and gratitude. You can share your photos and thoughts using the CPFF app, or on social media.
There are two ways to do this:
‘Tis the season to show your appreciation to those who give meaning to your life. Send a gratitude e-card to people who make your life better, when you make a donation to CPFF during the 21 Days of Gratitude Challenge, until December 21, 2023.
The holidays are also a time for gift-giving. Gift cards are a great choice, especially for those difficult to buy for; those who live far away; or when it’s difficult for you to get out and shop. As we described in our last issue, CPFF has an arrangement with FundScript, where each gift card you purchase (at more than 230 participating retailers) includes a donation to CPFF, at no extra cost.
Happy, hopeful, holidays to all!
CPFF contributes and learns at the 2023 CORD conference
As an affiliate member of CORD (The Canadian Organization for Rare Disorders), CPFF had two representatives at the 2023 CORD conference held on November 29 and 30 in Calgary Alberta. Others joined the conference online.
“It was important that we attend this conference held by CORD, which encompasses more than 120 affiliate members, representing patients with rare diseases, such as pulmonary fibrosis,” says CPFF Executive Director Sharon Lee. “This is especially critical now as CORD builds a Canadian Rare Disease Network and takes a leadership role in working with the federal government on its $1.5 billion Rare Disease Drug Strategy.”
In addition to sharing ideas and knowledge with other CORD affiliates in attendance, CPFF attendees heard presentations from patients, clinicians and researchers, as well as government and pharmaceutical representatives.
The CORD conference provided CPFF with insights into several issues of relevance to the PF community in Canada. They include:
- Understanding of the initiatives and programs of organizations like CADTH (Canadian Agency for Drugs and Technologies in Health) and Health Canada to hasten the drug approval process for drugs, including drugs for rare diseases.
- iRare centres. These are centres in Quebec that provide information on rare diseases when there is no patient organization. This is an opportunity for CPFF to provide information on PF to these centres to raise awareness and educate people living with PF.
- Funding for the development and improvement of patient registries. There may be an opportunity for CPFF to apply for funding in the future.
- Patient submissions to groups like CADTH and INESS (Quebec equivalent of CADTH). CPFF will likely be involved in managing these submissions during any pulmonary drug assessment process.
Globe and Mail column highlights issues with oxygen access and boosts PF awareness
In his November 21, 2023, opinion piece: “Access to oxygen therapy shouldn’t be this complicated,” respected Globe and Mail health reporter and columnist André Picard, references the Canadian Pulmonary Fibrosis Foundation’s (CPFF) recently published oxygen survey reports.
Picard writes a weekly column for the national newspaper (in print and online), along with other health-related features, and is the author of several books. As an influencer, he is widely read by the public, health care professionals and those involved in health care policy.
“Having Mr. Picard highlight our goal of equitable access to oxygen for all those who need it, is a real boost to our efforts,” says Sharon Lee, CPFF’s Executive Director. “Staff and decision makers in every health ministry in the country pay attention to his reporting and his column.”
Other media coverage of note, during August and September during our Awareness Month campaigns include:
- Global News Calgary CHQR AM 770 – 5:35 min live, on-air interview with Jackie Parker.
- CityNews Calgary at 6 – Story on Saturday evening news and posted to CityNews Calgary followers.
- CTV News Calgary – Online news story and 0:55 story on Saturday evening news and posted to CTV Calgary News online.
Through media coverage, community walks, advertising, and social media activities, CPFF raised awareness resulting in over 4.7 million interactions with PF content, fostered empathy, and generated over $100,000.
The caregiver’s journey
In two impactful photo videos, Heidi Schollenberg and Sandi Bjorgum, the wife and adult daughter, respectively, of Brad Schollenberg, share their thoughts and feelings on becoming a caregiver to a loved one living with pulmonary fibrosis.
With honesty, emotion, and hope, they lead you through their two unique caregiver journeys and how they have both learned to support Brad, and to be kind to themselves. Truly inspirational.
Both presentations were made at the Pulmonary Fibrosis Education Forum in Winnipeg, Manitoba on September 28, 2023. We thank Heidi, Brad, Sandi, and the PF Education Forum event organizers for allowing us to share these videos with our PF community.
Be alert for early signs, warns caregiver Bill
Looking back now, Bill Bradshaw, 76, recalls the early signs of his wife Jackie’s pulmonary fibrosis.
“She’d had a knee replacement and was understandably having trouble walking up hills and dealing with the stairs in our three-storey home. But, it wasn’t just muscle or joint pain. She was out of breath and would have to stop and rest,” he says.
The couple moved to a bungalow near a golf course, in Briar Hills, near Alliston, Ontario. Jackie was still having trouble breathing, while walking the dog, golfing, or cycling. One day, on her way back from walking the dog, she was very short of breath and stopped at a neighbours’ place, who said she was not looking well and got her some water and had her rest a bit. Back at home, Jackie was still not feeling right and took herself to the hospital.
Hope and Ollie accept what is and share words of encouragement
Just like Hope and Ollie, caregiver Heidi Schollengberg learned to accept a new reality, as she shares in her video: “Grieving What Was and Accepting What Is.”
Words of encouragement are important, for the giver and the receiver. Take a moment to enjoy some Messages of Hope from our supporters, across the country. Check back each week as we post words of encouragement from a different Canadian city. This week you’ll find messages from Avonmore, Ontario.
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].