Hard to believe that the summer is over, and that Pulmonary Fibrosis Awareness Month is kicking off! Not sure if everyone knows, but our fiscal year ended July 31, so we’ve started a brand new year. The Board held its annual retreat in Toronto back in June, where we affirmed our four pillars, namely:
- Educate Canadians and raise awareness about pulmonary fibrosis
- Support patients and caregivers
- Support research in order to better understand and find a cure for pulmonary fibrosis
- Give a voice to families touched by pulmonary fibrosis.
At the same time we set some priorities for the 2019-20 year. These include:
- We want to see the September Pulmonary Fibrosis Awareness Month celebrations expanded. Specifically, we would like to see more bubbles blown, more buildings lit up, and more proclamations from government bodies issued. We’ve got a great start on this, but I would encourage everyone to get involved, take pictures, make videos, share them on Facebook and send them to us!
- We want to see more Patient Support Groups start up. We would really like to get one going in Quebec.
- We want to upgrade the website in English and add some French content.
- We want to see some local committees to address regional issues. We’ve got some good traction in Calgary with the Pulmonary Fibrosis Society of Calgary, and would really like to use this as a model for a future regional committee structure.
- We need to recruit new Directors for the Board. Specifically, we’re looking for expertise in the accounting, legal and fundraising professions, as well as representation from Atlantic Canada, Quebec, Manitoba, Saskatchewan, British Columbia and Canada’s northern territories of Yukon, Nunavut and the Northwest territories.
Thank you everyone for all your support over the year. Remember, we are here for you, and we really appreciate your feedback on activities, priorities and focus.
September is Pulmonary Fibrosis Month
Communities across Canada are gearing up to increase awareness of pulmonary fibrosis and raise funds for education, research and support. Education sessions are being held; proclamations will be issued by governments; landmarks will sport red and blue lights; and groups of friends, colleagues and families will gather to blow bubbles in support of those who have trouble taking a breath.
If you or a family member is living with pulmonary fibrosis, participating in one of these events or initiatives can make a positive impact on your outlook and offers hope for the future of all Canadians living with the disease.
Events across the country will exemplify the theme of this year’s campaign: Living with Pulmonary Fibrosis and Staying Positive with Every Breath.
Blowing bubbles is a fun way to support people with pulmonary fibrosis
Let’s blow bubbles this September – All Canadians – All Together! Let’s tell the world that: “Breathing should never be hard work!” Gather your friends, family, colleagues or teammates and blow some bubbles for those who have trouble taking a breath. It’s fun, affordable and everyone can take part!
Use #CPFFBubbles and share your bubble photos and videos on Facebook. Please share your post with Sharon Lee at [email protected] or simply post it onto the CPFF Facebook page. Let your local media know when you are going to get together and ask them to cover your bubble blowing moment in their broadcast, newspaper or online. For more information, visit cpff.ca.
Education events in September both live and online
For the first time ever, you can attend a CPFF pulmonary fibrosis educational event without leaving home! The free event, featuring local PF experts and patients, will be offered online, as well as in person, in Edmonton, Alberta, on September 18, from 9 a.m. to 3:30 p.m., (MST), at The Royal Canadian Legion, Kingsway Branch 175 at 14339, 50 St. Parking and meals will be provided, as well as oxygen, if needed. Space is limited so you must register in advance. To register, contact Darlene by September 9 by email at [email protected]. To attend by video conference, from anywhere in the country, register with Darlene and she will send you the link to connect to the sessions.
An information afternoon will be held at the Stratford, PEI, town hall on September 24, from 1:00 p.m. until 3:30 p.m. Guest speakers at the event will include: a drug company representative, someone from the University of PEI pulmonary rehab program, a dietician and a representative from an oxygen supplier. The afternoon will also feature a chair yoga instructor and refreshments. Following the guest speakers, members of the support group with IPF will be available to talk to people about IPF, how it affects them, medications and other topics.
In Burnaby, British Columbia, several groups, including CPFF, are working together to hold an education event featuring local pulmonary fibrosis experts and people living with PF on September 20, from 10:00 a.m. until 3:00 p.m. at Element Vancouver Metrotown, 5988 Willingdon Ave, in Burnaby, B.C.
While attendance is free, you must register in advance. To register, call the BC Lung Association at 604-731-5864 or e-mail: [email protected]. Space is limited. This event is intended for people living with PF and their caregivers. There is a limit of one guest per registrant.
Promoting awareness of pulmonary fibrosis
In St. John’s, Newfoundland, September will be proclaimed Pulmonary Fibrosis Month and a flag will be raised. At a similar event in Charlottetown, PEI, the local support group has made arrangements for a symbolic flag raising event at the Lieutenant Governor’s residence.
The event will receive press coverage by the Charlottetown newspaper The Guardian. Vancouver, Burnaby, Edmonton, Calgary, Markham and Toronto will also all make proclamations declaring September Pulmonary Fibrosis Month.
Several landmarks across the country have already agreed to shine the light on pulmonary fibrosis by lighting up buildings and signs in the CPFF colours of red and blue during September. These include: BC Place, the Calgary Tower, the CN Tower, the Toronto sign at Nathan Phillips Square and the Toronto City Hall, Mississauga City Hall, the Hamilton City Hall sign and the Niagara Falls sign. Photos will be posted on the CPFF Facebook page. Please share them with your friends.
CPFF will also be featured in On the Go magazine, distributed in the Toronto area, with an article about pulmonary fibrosis and an advertisement about the Bubble campaign, as well as short video signage in the Toronto system of underground shops and eateries. You can see these here.
Raising awareness and funds for research
This year the Clarke Walk will be held at Edworthy Park, 5050 Spruce Drive in Calgary, on September 15 from 11 a.m. to 3 p.m. It’s a fun, family event for a worthy cause. You can register to walk or run yourself and collect pledges, or sponsor someone else, or just make a donation. Check out the web page here and watch the video where Abbie Clarke shares her story with you.
The Scotiabank Charity Challenge in Toronto is set for October 20, 2019. Click here for more information and to register.
It’s time to contact your federal candidates
Next month you, along with all eligible Canadians, will have the opportunity to vote in the federal election. Now is the perfect time to get in touch with your local candidates – all of them – to ask how they are going to support people living with pulmonary fibrosis? To make it easier, you can adapt our sample email to send to your local candidates.
How will the candidate and their government improve access to anti-fibrotic medications for those without prescription drug coverage from their employers or a private insurer, who are not yet 65? Will they implement a new national pharmacare plan, which will address this gap in access to these essential drugs?
Studies have shown that pulmonary fibrosis and idiopathic pulmonary fibrosis are complex diseases, which can be difficult to diagnose. Often people are initially misdiagnosed with chronic obstructive pulmonary disease (COPD) or asthma. In some cases it can take up to two years to receive an accurate diagnosis. How will the candidate and their party support physician education to improve the chances of an accurate diagnosis – much earlier. An earlier, accurate diagnosis and earlier access to specialists and the correct treatment, means a better quality of life for a longer time, for people living with pulmonary fibrosis.
How will the candidate and their government address the current inequalities in access to life-saving oxygen? For those who struggle to breathe, access to oxygen and its delivery is critical, including timely access to ambulatory and personalized home oxygen services.
Finally, will the candidate and its government commit to increased funding for IPF research to a level that reflects the considerable and growing impact of the disease in Canada. Research is the key to this currently incurable disease, offering hope for new life-extending and life-enhancing treatments for the people living with pulmonary fibrosis, their families, friends, employers and communities. Ultimately, a cure will be the result of investments in research.
Now is your chance to be heard. As part of the Canadian pulmonary fibrosis community, your voice adds to the volume of our cause, making it harder to ignore.
Send your email to candidates today. Please copy [email protected] on your email and forward to her any responses you receive. (This will help with future CPFF advocacy efforts with elected candidates.)
Note: Although most health care and post-secondary education spending is determined by provincial governments, the federal government does set many national health care and post-secondary education policies, which provinces and territories must adhere to in order to receive federal funding. It should also have a coordinating role, ensuring equal access to quality health care, for all Canadians regardless of where they live in the country. Finally, the federal government is also a large funder of health-related data collection and research.
The second Sunday in September is Grandparents Day in Canada. This Sunday, September 8, make plans to spend some time with your grandparents. Any enjoyable, family activity is a great way to celebrate. Consider gathering the family to Blow Bubbles for Pulmonary Fibrosis Awareness Month. It’s a fun activity, that anyone can do, and it’s for a good cause. Take some photos or video and post them to your Facebook page. And remember to share them with the Canadian Pulmonary Fibrosis Foundation (CPFF) Facebook page too.
If your grandparents are not close by, or no longer living, consider making a donation to honour them on Grandparents Day with a honourary or memorial donation to CPFF. It’s a lovely gesture to acknowledge all that your grandparents mean to your family.