There is no doubt that Robert Davidson, CPFF’s late Founder would have been the first person to ask how CPFF could help people living with PF during the COVID-19 pandemic. He would then have got to work helping those needing information, reassurance and support in these uncertain times.

May 1, 2020, marks the one-year anniversary of the passing of Robert Davidson, who lived with IPF and established the Canadian Pulmonary Fibrosis Foundation (CPFF) in 2009, less than two years after his own diagnosis and a few months before receiving a double-lung transplant.

He founded the organization to raise funds for research, to provide reliable information to the public, patients and governments and to offer support programs to those affected by pulmonary fibrosis.

Within 10 years, CPFF raised more than $1 million to invest in research, including funding several Robert Davidson clinical fellowships, launched the CPFF website, established support groups across the country, developed a Canadian Patient Charter and successfully advocated for improved access to anti-fibrotic medications in all provinces and territories.

“There is no doubt that CPFF owes its existence to the determination and hard work of Robert,” says Kirk Morrison, Chair of the CPFF Board. “He was an inspiration to so many, including others living with IPF, their families, volunteers and researchers.”

You can help us continue Robert’s legacy of helping Canadians with pulmonary fibrosis, especially during these frightening times. We need your help to provide the virtual resources our vulnerable community needs to stay informed, supported and connected during the COVID-19 pandemic. Please make a donation in Robert’s memory today. He would thank you. 

It is with great sadness that we announce the passing of Founder Robert Davidson on May 1, 2019 at 71 years of age. He established the Canadian Pulmonary Fibrosis Foundation in 2009, less than two years after his own diagnosis and a few months before receiving a double-lung transplant.

“There is no doubt that the Canadian Pulmonary Fibrosis Foundation owes its existence to the determination and hard work of Robert,” says Kirk Morrison, Chair of the CPFF Board. “He was an inspiration to so many, including others living with IPF, their families, volunteers and researchers.”

“Everyone I have met in the PF community knows him,” says Sharon Lee, Executive Director of CPFF and its first paid staff member, hired last year. “He rallied everyone and gave them hope. He launched our website providing reliable information about the disease for Canadians living with PF. He raised funds for research and started the support groups that were so desperately needed.”

In 2018, the first two Robertson Davidson Fellowships were granted. And this year, research funding may top $1 million in total. He leaves a monumental legacy of awareness, information and hope for the pulmonary fibrosis community in Canada and around the world.

Born in England on May 24, 1947, Robert and his wife Heather immigrated to Canada, where Robert pursued a career as a Chartered Accountant and they raised two sons. He was also a senior level soccer referee. It was difficulties he experienced during fitness testing to retain this status that led to his diagnosis of IPF at 60.

Rather than give in to the disease and die, he decided to fight and live as normal a life as possible, borrowing from Winston Churchill, the mantra: “Never surrender.” You can read his own account of his journey and accomplishments in establishing CPFF in his 2018 last message as CPFF President, which follows.

“We are all incredibly grateful for his monumental contributions,” says Kirk, “and we extend our heartfelt condolences to his wife Heather, his sons, grandchildren and his many friends.”

I was diagnosed with pulmonary fibrosis (PF) in October 2007 and was advised to research it on the web. What I found was shocking.

This is an incurable disease which affects 30,000 Canadians, killing 5,000 each year. Worse than most cancers. Worse, I also discovered that there was no support for Canadians and only about $3,000,000 was spent on research each year. It was as if PF sufferers did not matter.

I took almost two years off to do some bucket list stuff then, in August 2009, I decided to establish a charitable foundation to raise research funds, raise awareness about the disease and provide support to PF patients across Canada.

My son and his friend, with input from me, built our first website in December 2009/January 2010. This went live in February 2010 after I got out of hospital following my double lung transplant.

The result was amazing. There was obviously a pent-up need, as I started getting emails and phone calls from patients and caregivers across Canada immediately. Since that time I have counselled many, many PF patients and helped them advocate for their health care.

We funded our first research grant in September 2010. This was for $52,000 to Toronto General Hospital to study the relationship between acid reflux and IPF (Idiopathic PF, i.e., PF “of unknown cause”). Since then we have committed almost $1,000,000 to research into the disease.

Over the past 9 years there have been changes and a lot of activity. We have spent approximately $300,000 on patient education and support and awareness. We have also advocated with various provincial health ministries across Canada and have redesigned the web site twice, providing up to date information for patients.

In 2016 we expanded the Board of Directors from four, family-only members to nine, with five non-related people being added. We again expanded the Board in 2017 to 12 members. The Board now includes members from five provinces from Newfoundland to BC.

With the expanded Board we have been able to be more active in setting up support groups across the country. These support groups are rapidly expanding and we are working on groups in Manitoba, Quebec and Newfoundland, plus additional groups in Ontario. Soon I believe we will have support groups in every province.

In 2017 we established a Medical Advisory Board to examine grant requests received from the research community. This group is made up of eight of the top Interstitial Lung Disease doctors and researchers and will help ensure our grant money is used wisely.

I have been sick for the past year and a half and I need to take time for myself. It is now time for me to step back and let someone else take the Foundation to the next level and ensure its survival, so that it can continue to be the face and voice of PF sufferers across Canada. I have been honoured and privileged to have this chance to help so many people and I have met many new friends through my work with CPFF.

I will stay on as a Director and will be an Ambassador for CPFF and PF patients and caregivers. Nobody gets rid of me that easily.

I would not leave unless I had secured a qualified replacement President. I am resigning effective January 1, 2018 and I am delighted to introduce Kirk Morrison as the new Chair of the Board of Directors of the Canadian Pulmonary Fibrosis Foundation immediately thereafter.

Kirk is an Executive Vice President at a major public company and has also served as a board member on various charities. He has excellent leadership qualities and he is close to IPF having a close family member who suffers from the disease. I am confident Kirk can take CPFF to the next level.

Thanks to everybody who has supported me the last nine years. I have enjoyed working with you all.

Robert Davidson
Founder, CPFF

Robert Davidson started the Canadian Pulmonary Fibrosis Foundation (CPFF) in 2009. Robert was diagnosed with idiopathic pulmonary fibrosis in 2007, after noticing a breathing problem while completing his annual fitness test for Class 2 soccer referees, his favourite activity aside from his life as a Chartered Accountant and proud father of two.

The diagnosis shook his family. Robert and his family had no prior knowledge of the disease, and a quick Internet search showed he not only had a very poor prognosis, but also there was no evidence of any Canadian support network. They were of course concerned and felt alone and Robert assumed others who had received this diagnosis felt the same. There was nowhere to go in Canada. He pledged to never surrender.

he next few years entailed many routine appointments and tests. Sadly, in 2009, a heavy chest cold sent his disease into a downward spiral, forcing him to leave his accounting practice. This setback gave way to Robert’s new plan, to find a way to help others with this dreadful disease. That year, he started the CPFF. That same year, Robert learned he was in end-stage IPF, and in critical need of a lung transplant.

Luckily, in early 2010, Robert received two new lungs at Toronto General Hospital. During his recovery, he spent time learning about his disease, and discovered there was little research funding for pulmonary fibrosis even though an estimated 4,000 people die from it each year in Canada.

With his growing strength, Robert chose to focus all his time to the CPFF. Starting at first by fielding calls and emails from other patients looking for support, and relying on family and friends for help with fundraising dinners and golf tournaments, Robert went on to build an organization that has significantly improved awareness for pulmonary fibrosis in Canada and worldwide.

In the first six years of the CPFF, Robert enabled the foundation to make research grants across Canada approximating $800,000 to date and this number continues to rise. In addition almost $500,000 has been spent on patient support and education.

As the founder of CPFF, Robert’s ongoing guidance, vision and dedication to Canadians touched by pulmonary fibrosis continues to be unmatched.