Newsletter

January, 2021


Reflecting on 2020

CPFF Executive Director Sharon Lee

As the new year begins, I am spending time thinking about the gratitude, regard and appreciation of the pulmonary fibrosis (PF) community.

While some may remember 2020 for its challenges, I know I will look back on 2020 as the year I saw boundless generosity and communities (CPFF, Scleroderma, Lung Associations, EU-IPFF) coming together.

I will remember how so many of you opened your hearts in support of CPFF with donations and participation during our Hope Breathes Here campaign.

I know many of you and your families are struggling with illness, depression, and financial hardships, while waiting for the COVID-19 vaccines.

I am grateful for your friendship and appreciate the privilege of sharing your experiences to ensure that CPFF continues to meet the needs of our PF community.

I invite all you to go to www.HopeBreathesHere.com and watch the educational videos to learn more about PF and enjoy our inspirational Wrap up & Applause video.

Thank you with gratitude, regard and appreciation. Thank you for being my inspiration and for your contributions to help us provide information and hope to our PF community.

Looking forward to doing great things together in 2021.

Peace, joy and good health,

Sharon Lee, Executive Director
Canadian Pulmonary Fibrosis Foundation


COVID-19 vaccine update

Many in our Pulmonary Fibrosis Community have been asking questions about the COVID-19 vaccines now arriving in Canada. We’ve consulted with members of our Medical Advisory Board, and you can find our latest update below. You can also visit the Health Canada website for its COVID-19 vaccine updates. The government website also has links to provincial and territory COVID-19 vaccine pages on their websites.

COVID-19 vaccine update – December 20, 2020

Patients with lung fibrosis are accustomed to doing what we know prevents infection: they wear masks, perform hand hygiene, and avoid crowds. Sadly, if patients with lung fibrosis get the disease caused by COVID-19, they have a higher risk of severe illness or death.  Patients with pulmonary fibrosis are considered members of a higher risk group.

From what we know so far, the vaccines against COVID-19 are well tolerated and safe.  None of the currently available products are “live vaccines.” They are based on using parts of the virus, such as components of the surface or the interior makeup of the virus (the so-called messenger RNA vaccines). Therefore, they can be considered for use by those with a compromised immune system.

For specific questions and concerns about the COVID-19 vaccines, patients with lung fibrosis should speak to their physicians.

CPFF will continue to keep you posted on any developments as we become aware of them. Follow us on Facebook and Twitter, or check the COVID-19 section of our website for updates.


Don’t delay important conversations about PF

When it comes to managing your pulmonary fibrosis (PF), taking early action is crucial. A new awareness campaign, developed in collaboration with Hoffmann-La Roche Limited, encourages individuals to connect with their health care provider to discuss their care options.

At a time when it can be tempting to skip medical appointments, it is more important than ever to understand your PF management options and the care available to you. A recent survey conducted by CPFF shows that it takes an average of two years from the onset of symptoms for a patient to be diagnosed, but by the time symptoms appear, scarring has already begun to cause damage in the lungs.  If you or someone you know has been diagnosed with PF, you shouldn’t delay speaking with your doctor about your treatment options.

Seeking information about how to manage your PF is a timely matter for a few key reasons:

  1. Early diagnosis and treatment can help reduce scarring in the lungs, which may help slow down disease progression
  2. This is turn may help to manage symptoms and prevent flare-ups
  3. As treatments may help to reduce the scarring in the lungs, it may also help preserve lung function, allowing you to keep up with the activities you love for as long as possible.

You should feel empowered to take action in the management of your PF, and that starts by taking charge of your management plan. Don’t delay. No matter how recently you were diagnosed, today is a good day to speak with your doctor to learn more about managing your symptoms and well-being.

Read more and watch the video about getting the conversation started and learn tips to help with your plan to ‘Don’t Delay’ today.


New webinar on IPF therapies

If you have IPF, or know someone who does, you don’t want to miss this presentation by Canadian experts. Beginning at 6 p.m. EST on January 20, 2021, Dr. Shane Shapera and Dr. Shaf Keshavjee will present a webinar called: Therapies for IPF –  From Pills to Lung Transplantation.

About the presenters

Dr. Shaf Keshavjee is a thoracic surgeon and Director of the Toronto Lung Transplant Program. He is Surgeon-in-Chief, James Wallace McCutcheon Chair in Surgery at University Health Network. He is a Professor, Division of Thoracic Surgery and Institute of Biomaterials and Biomedical Engineering, and Vice Chair for Innovation, Department of Surgery at the University of Toronto.

Dr Keshavjee’s clinical practice is in thoracic oncology, lung cancer and lung transplantation. He has a passion for surgery and innovative research. He is a senior scientist in the Toronto General Hospital Research Institute, University Health Network. He leads a team of researchers in a foremost research program and is widely published in the field. His specific research interest is in lung injury related to transplantation. His current work involves the study of support systems, molecular diagnostics and gene therapy strategies to repair organs and to engineer superior organs for transplantation.

He received the Lifetime Achievement Award from the Canadian Society for Transplantation for his contributions to the field of lung transplantation. He has also received two Queen Elizabeth II Diamond Jubilee Medals and the Governor General’s Award for Innovation. He was awarded the Order of Ontario and also received Canada’s highest civilian honour with an appointment as an Officer of the Order of Canada.

Dr. Shane Shapera

Dr. Shapera is an Associate Professor in the Faculty of Medicine at the University of Toronto.  He is currently the Director of the Interstitial Lung Diseases Program at the Toronto General Hospital, UHN. He also works with the Toronto Lung Transplant Program providing pre-lung transplant assessments for patients with interstitial lung disease.


Researchers seek survey participants

Researchers want to know your thoughts on genetic testing for PF.

The University of Calgary is seeking people with pulmonary fibrosis and their first-degree blood relatives over the age of 18 to complete a survey entitled: Genetic testing perceptions: survey and focus group of patients and family members of those living with interstitial lung disease.

The purpose of the project is to understand the ideas that patients and family members have about genetic testing for pulmonary fibrosis (PF) in Canada. The 20-minute, online survey, designed by the University of Calgary’s Interstitial Lung Disease Program, will ask you questions about pulmonary fibrosis and your thoughts and ideas about genetic testing. There will also be a voluntary follow-up focus group. If you are interested in completing the survey, please click here.

Background

Our understanding of genetics in PF is rapidly evolving. To date, research has shown that some genes increase the risk of developing PF. Certain genes may also affect how some treatments work for PF. While we have learned a lot over the past decade, there are still many unanswered questions about how genetic mutations affect patients with PF.

In Canada, testing for genetic mutations associated with PF is not widely available. A Canadian clinical genetics program could help advance our understanding of PF and potentially help us recognize who is at greatest risk of developing this disease. The aim of such a program would be to provide helpful and relevant information to patients and family members. Understanding patients’ and family members’ expectations, concerns and interest in clinical genetic testing is important to build a program that is meaningful to the PF community.


PanAmerican Seed selects CPFF as 2021 donation recipient

PanAmerican Seed will donate a portion of its Beacon Impatiens global seed sales for 2021 to CPFF.

In the spirit of bringing colour – and happiness – back to shade gardens all over the world, PanAmerican Seed has committed to donating a portion of its Beacon Impatiens global seed sales to the Canadian Pulmonary Fibrosis Foundation (CPFF) for 2021.

Beginning in 2020, the company has committed to donating a portion of its Beacon seed sales to a different, less-widely known, charitable organization each year. CPFF has been selected as its 2021 charity. PanAmerican Seed, “aims to shine a light on issues and organizations that are perhaps smaller and don’t get as much exposure or funding.”

“We are incredibly pleased to be chosen as PanAmerican Seed’s charity for support for 2021,” says Sharon Lee, Executive Director, CPFF. “We look forward to working with them to increase awareness of pulmonary fibrosis through their social media channels and to receiving their donation in September during Pulmonary Fibrosis Awareness Month.”


Market research firm seeking PF patients and caregivers

A market research firm is seeking to connect with people with PF and caregivers for paid market research activities.

CRC Research wants to connect with people who have been diagnosed with idiopathic pulmonary fibrosis (IPF), Systemic Sclerosis-ILD (SSc-ILD) and Progressive Fibrosing-ILD (PF-ILD), as well as caregivers for individuals with these conditions, to participate in a paid market research study. The purpose of the study is to further understand how this community can be better supported.

Your identity will remain confidential and will not be shared or used for any sales-related activities. If you qualify and participate in the study, the market research company will compensate you for your time for each activity in the range of $150 to $175, depending on the activity completed.

If interested, please contact Varsha from CRC, a confidential market research company at
Varsha.Singh@crcresearch.com or 604-714-5948.

While you may face some challenges or have some concerns with technology and completing an assignment within a set period of time, the market research agency is prepared to help and recommend possible flexible solutions to help make this process as smooth as possible.

The primary goal for this confidential market research study is to understand your
experience with pulmonary fibrosis, the challenges, and where you need support. The market research company involved wants to understand how to better support this community and wants to incorporate your feedback and thoughts to make the support as impactful as possible.

Study design details 

The study consists of four sets of activities over the course of ten months. While the firm would like you to participate in all the sessions, they understand things may come up and you might need to miss one or two. Each activity will cover a different topic and you will be asked to log in to a private platform for a total of 60 minutes during a seven-day period.

The research also involves touching base approximately one to two times over the 10-month market research study period via an online 60-minute focus group, conducted by a professional moderator with two or three other participants.

If you are interested in participating in this market research, please respond to the above contact and they will reach out to you with more information, some brief questions to determine if you qualify, and next steps. While the market research company wants to hear from everyone to understand the ILD experience, they’re limited in how many people they can speak to. At this time, they are only taking 14 participants diagnosed with the conditions and eight unique caregivers.