By now, we hope that most Canadians living with pulmonary fibrosis have been fully vaccinated, along with their eligible closest family members and/or caregivers. If not, please contact your local public health unit and find out how you can access the vaccines you need to protect yourself and your loved ones from COVID-19.
If you have received both vaccines, as a member of a vulnerable population, you should still exercise caution, especially in crowded public spaces and indoors. Most likely, before the pandemic, you were advised to get your flu and pneumonia vaccines, wash your hands frequently, avoid others who are sick and limit time spent in crowded places. You may even have worn a mask at times. You will want to be diligent about observing these health precautions even after you have had your two COVID-19 vaccines.
There have been some media reports about the possibility of booster shots – a third vaccine dose – for older people and those with compromised immune systems. Some countries are already proceeding with such booster shots. There are no plans as yet for booster shots in Canada. We will keep you posted if this changes and if it applies to people living with pulmonary fibrosis.
In the meantime, if you have any questions about how you should proceed now that you’ve been fully vaccinated, please consult your primary health care provider and/or your respirologist for specific answers, considering your risk factors and medical history. You can also check out international, national and provincial websites for accurate and updated information about COVID-19 and vaccines. Visit the helpful links page in our COVID-19 section, to access these websites.
Next month, as part of Pulmonary Fibrosis Awareness Month, the Canadian Pulmonary Fibrosis Foundation, will be sending an email to provincial health ministers and drug plan managers across the country, to advocate for access to nintedanib (Ofev) for all ILD patients who would benefit, not only those with IPF.
You can read the full text of the email CPFF will be sending out in the Advocacy section of our website.
To encourage action by these elected officials and public servants, we are asking you, as a member of our PF Community to send an email to your MPP or MLA to encourage them to contact their government’s health minister to take action on our request. A sample email, including access to finding your MPP/MLA’s name and email address are available to make this a simple task to complete on behalf of all those with chronic pulmonary fibrosing ILDs.
If you have IPF and currently have access to Ofev, your voice can be particularly influential if you share what access to this treatment has meant to you – and would to others.
While CPFF recognizes that governments’ health care resources are currently focused on battling the COVID-19 pandemic, we believe that now is the time to add nintedanib to federal and provincial formularies, so at least it can be covered by private drug insurance plans, partially or fully, depending on an individual’s healthcare plan.
Of course the ultimate aim is to have equal access, fully reimbursed, for all Canadians who live with the debilitating effects of chronic pulmonary fibrosing ILDs.
Please take a few minutes to add your voice to our national campaign to improve the lives of so many more in our PF Community. Together, our voice is louder and stronger!
Pulmonary Fibrosis Awareness Month this September may be our best ever, despite the lingering risks of the pandemic. Once again, most events and activities will take place safely online. What’s on offer will help you and your family, friends and colleagues connect and spread the word about PF to the rest of the country in fun and engaging ways. There are also new educational sessions online to help you live your best life with PF. And there are ample opportunities to share your stories, photos and videos.
Visit hopebreatheshere.com, CPFF’s website for Pulmonary Fibrosis Awareness Month to register for anything or everything (you choose) that’s on offer and more details about each event and activity. Here’s a quick rundown of what’s happening:
Hope Breathes Here Clarke Walk for Pulmonary Fibrosis
Join CPFF, the Clarke family and fellow Canadians as we walk to help CPFF raise awareness and funds for a pulmonary fibrosis cure. Walk on your own or with a team throughout September, and let’s see how many kilometers we can collectively walk from coast-to-coast. Find out more about how you and your family, friends and neighbours can register or support participants, at hopebreatheshere.com.
Mission Possible for Hope Breathes Here with John Dennis
Take a moment to check out John Dennis’ Mission Possible, which has the lung transplant recipient riding an ebike daily over various trails and highways in Nova Scotia during September as part of the Hope Breathes Here Clarke Walk event. He’ll be seeking pledges with a goal of raising $25,000 and you can support his effort through the online Walk registration. John had his single lung transplant on March 12, 2021 in Toronto and returned to Nova Scotia this past June. “I will ride anywhere I am asked and I will speak to any group, so that I can raise awareness of pulmonary fibrosis and raise funds for the cause.” You can read more about John’s transplant journey in the April 2021 issue of our newsletter.
Virtual Bubbles Event
On Labour Day, Monday, September 6, get your entire family involved in a virtual bubbles event. Bubbles are carefree and nostalgic, and they require something people with pulmonary fibrosis don’t take for granted – the ability to breathe. Take photos or videos of your family and friends blowing bubbles and post them to Facebook, Twitter and Instagram with the hashtag #hopebreatheshere.
Visit hopebreatheshere.com for more information and to share your photos on the website.
Webinars and Educational Forums
Participate in informative CPFF educational sessions about pulmonary fibrosis, through virtual video sessions during the month of September. Get expert insights and support from medical and healthcare professionals, and connect with other PF patients and caregivers across Canada. A diverse line up of healthcare experts will share the latest pulmonary fibrosis (PF) research, insights on disease management, the impact of COVID-19 on PF, and so much more. Video sessions will take place online and are easier than ever to access from anywhere with an internet connection. Participate in sessions as they happen in any province, from the comfort of your home. Visit hopebreatheshere.com to learn more and register. The webinars will also be recorded and posted online afterwards, so you can watch them anytime.
Hope Breathes Here Wrap-up & Applause
Join us as we wrap up global pulmonary fibrosis month and Hope Breathes Here 2021 with a Canada-wide video call. Together we’ll celebrate the new memories and friendships we’ve made with a recap slide show packed with photos shared by our pulmonary fibrosis community throughout September. All month long our community will be walking to build awareness for pulmonary fibrosis and raising money to help fund research, patient, and caregiver services. Tune in to this live video stream as we unveil how many kilometres we’ve collectively walked across Canada and how much money we’ve raised. More information coming soon!
In addition to the events listed above, hopebreatheshere.com offers speaker bios, researcher videos, back stories, and opportunities to share your personal story, photos and videos, and so much more.
As in years past, we are asking elected officials to proclaim September as Pulmonary Fibrosis Month. We’ll be asking them to videotape the proclamation, so we can post it on hopebreatheshere.com and on our social media channels.
And, CPFF is once again asking its supporters to request the lighting of community landmarks in September to promote Pulmonary Fibrosis Awareness Month. Sports facilities, clock towers and town halls are often able to be lit up for charitable purposes. We’ll post photos on our social media channels and on hopebreatheshere.com. If you take photos for Facebook, use the hashtag #hopebreatheshere and they’ll also appear on hopebreatheshere.com.
As in past years, we encourage you to take photos and videos of your own bubble blowing gatherings with family and friends (in accordance with physical distancing rules), and post them to Facebook using the hashtag #hopebreatheshere. It will then be shared on www.hopebreatheshere.com.
Everyone at CPFF is very excited about the opportunities we all have to connect, learn and have fun during Pulmonary Fibrosis Awareness Month this September. Please register now and get involved.
Board Chair Kirk Morrison, on behalf of The Canadian Pulmonary Fibrosis Foundation, is very pleased to welcome two new members to its Board of Directors: Mark Ashcroft of Oshawa, Ontario, and Holly Smith of Ladysmith, B.C. Both are individuals living with pulmonary fibrosis.
In addition to their first-hand perspective of the disease, they each bring unique skills and experience to their role as members of the Board of Directors. Mark has spent most of his career in paramedic and fire services. He is currently a professor in the pre-fire program at Seneca College and during more than 31 years at Toronto Fire Services (1987 to 2018) served as the acting district chief and a training officer. He also worked as a primary care paramedic for Durham Region Paramedic Services, for six years full time and 17 years part time, after joining Toronto Fire Services.
Mark currently serves on the Board of the Oshawa Senior Community Centres 55+ and the Oshawa Public Library. He also served for nine years on the Lakeridge Health Corporation Board of Trustees and for two years on the Durham Access to Care Board of Directors. During his time at Lakeridge, a large, multi-campus hospital, with a $750 million budget, Mark was involved in strategic planning and governance.
Holly has a Master’s degree in social work and a PhD in psychology. She worked as a social worker and as a registered psychologist until her retirement in 2019. Along with Martha Hardy, she co-founded the Central Vancouver Island CPFF support group and currently serves as its co-chair. She also serves as an educator/facilitator for Vancouver General Hospital Lund Rehabilitation Program, teaching and supporting interstitial lung disease patients that struggle with preparatory and anticipatory grief.
Holly is particularly interested in supporting those from oppressed minorities deal with the duel challenges of living with a life-altering illness, along with their fear in accessing needed resources.
Visit the Board of Directors page on our website to read more about these two new Board members, as well as the other volunteers serving on our Board of Directors.
Executive Director Sharon Lee is pleased to announce the appointment of Roberto Zapata as Project Coordinator for the Canadian Pulmonary Fibrosis Foundation, effective July 19, 2021.
Roberto will be responsible for project implementation and management, including planning, budgeting, scheduling and monitoring projects through to completion. He will also serve as the “point person” for CPFF’s 22 patient support groups and identify opportunities for new groups. Roberto will also foster the development of a volunteer data base. In addition, he will fulfill administrative duties to ensure efficient and compliant Foundation operations, including: managing the donor database, issuing tax receipts, reconciling donations from all sources, grant writing, budget tracking and recording, as well as planning and attending events as required.
Roberto holds a Bachelor of Commerce degree from Concordia University and resides in Quebec. He is fluent in English, French and Spanish. He was most recently employed as an account coordinator with Fundraising Direct and worked on fundraising campaigns with a number of clients, including UNICEF, Heart and Stroke Foundation and PLAN Canada, among others.
“I am glad and grateful for the opportunity to put my experience and skill set to good use within the CPFF community,” says Roberto. “I hope to be a soothing presence for those who need support, to spread knowledge and awareness across Canada and beyond, to help fund as much research as humanly possible and, ultimately, to allow those affected by PF to be heard loud and clear.”
Roberto will report to Sharon Lee and work remotely from his home office in Quebec.
“I am very glad that Roberto has joined our CPFF community and I’m sure his energy and skills will be valuable assets to our organization,” says Sharon. “I know our volunteers and supporters across the country will extend a warm welcome to him.”
Jerry Craig died of IPF in 2020 at age 74. His son, James Craig, who helps run the Halifax, Nova Scotia CPFF support group, co-authored a book where all the proceeds go to charity and James’ portion goes to CPFF. The six co-authors are from five countries and two continents. They decided to write a non-profit book during the COVID-19 pandemic to help support six different charities around the world. The book is an #1 Amazon best seller and is called Teams Win Championships.
While it has a business sales theme, it is about moving from an “I” to a “We” mentality; in the same way that CPFF volunteers come together as a national team to help fight PF and support those who live with the disease and their families. Buying the book for yourself, your loved ones, your co-workers or your friends in business, is an incredible way to give back to those who need it most.
Buy a book for Jerry and support CPFF. Available exclusively on Amazon.