Vacation and summer have not been synonymous for the CPFF during 2018. The summer has been both hectic but rewarding for both the Board and our staff. I know that Sharon has been wondering what she signed up for when she accepted the Executive Director position, but she’s jumped into the position feet first,  has taken it to heart, and is putting in long hours with lots of enthusiasm. On behalf of the Board, I would like to thank her for her hard work, and commitment to all of our stakeholders.

Most recently, we provided logistics and assistance to Olivia Mendicino and Julie Ann Chiodo, on their Forever Lungs bike ride from Vancouver to Toronto. Our efforts paid off as they finished the ride safely, and were really successful both raising awareness about PF (they got great press coverage across the country), and fundraising (they raised over $34,000 for us). A special thanks to Olivia and Julie Ann – they are simply two outstanding young women!

The Board held a Strategic Planning session in Toronto back in June. We had a very productive session where we re-affirmed our strategic priorities, namely:

Equally importantly, we had the opportunity to hear from Sharon on what she would like to accomplish both short and long term. Through this we set some short term objectives and are looking forward to getting a progress report on how we are making out on these objectives at our September Board meeting.
Our next focus is making a big splash for PF Awareness Month in September. We plan on doing this in 3 ways:

Thanks again to Sharon, the Board, our Medical Advisory Board, our Support Groups, and to everyone on our distribution list for their support. We’re doing really well, but we won’t be done until PF is no longer an issue in our country. Have a great end to your summer, and I look forward to seeing everyone’s “bubble pictures and videos” on the internet. As always, please don’t hesitate to contact me if you have any comments or questions.

Regards,

Kirk

I cannot believe that we are now entering the final weeks of summer before Labor Day weekend, and it has been quite a busy few months for me.
 
In April, I was invited to the European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF), a non-profit organization that brings together European national patient associations committed to defending their vision of equal access to treatment and care for all IPF patients, regardless of geography, socio-economic status or age.
 
I was able to learn about the progress being made in Europe and share with them on what’s happening in Canada.
 
I was invited by Boehringer Ingelheim in June to participate in their patient advisory board meeting. It was very informative to hear about their research, meet their researchers and their willingness to hear feedback from patient organizations such as CPFF.
 
At our June board meeting, our Board of Directors and I came together to lay out the strategic plan that will carry CPFF for the next 3 years. To focus on our 4 pillars:
 

1. Educate and raise awareness about PF among Canadians;
2. Support PF patients and caregivers;
3. Raise funds to finance research and;
4. Give a voice to PF patients and caregivers.

I am in the process of laying out the bricks and mortars to executive our vision for the future.
 
An amazing thing happened in July. I met two amazing women who had a vision and goal to honour their loved ones (Olivia in memory of her father Ettore Mendicino who passed away on October 8, 2014; and Julie Ann in support of her uncle Carmen Ragno, who had IPF before receiving a lung transplant).

These two women cycled 4,374 km from Vancouver to Toronto in 4 weeks (July 8^th to August 8^th). They sacrificed their family time to take on this mission to raise awareness and funds in support of CPFF. I would ask everyone who were away this summer to check out CPFF’s Facebook and see the postings on their adventure.


September is Pulmonary Fibrosis month, and CPFF is asking everyone to show their support by blowing bubbles for those who can’t. Go to our Facebook and post your pictures or videos on who you are blowing bubbles for, with the hashtag, #CPFFBubbles. Send your pictures or videos to admin@cpff.ca along with your story, as I’m looking to putting faces to this disease. When you send me your pictures or videos, along with your stories, it is assume that you have given CPFF permission to use them on our website, in our printed materials, as we push for the Patient Charter of Rights, earlier diagnoses and support for our caregivers.
 
During this month, CPFF have events taking place in BC, Alberta and in Ontario. CPFF have requested several buildings to be light up in CPFF’s colours of Red & Blue to create awareness of Pulmonary Fibrosis. Please take a picture of the building light up and send it to me if possible to admin@cpff.ca
 
September 2, 2018 in Calgary, AB
Calgary Tower will be light up
 
September 8, 2018 in Hamilton, ON
Locke Street Festival, come out and visit CPFF booth
 
September 19, 2018, starting at 10 pm in Toronto, ON
CN Tower
Port Credit Light House
City Hall
 
September 28, 2018, starting at 10 pm in Niagara Falls, ON
Niagara Falls facing Canada
 
September 19, 2018 in Vancouver, BC
BC Place
Roger’s Arena
Harbour Centre
Vancouver Convention Centre
5 Sails
 
Pulmonary Fibrosis Awareness Day will be observed at Helena Gutteridge Plaza at 12:30 pm adjacent to Vancouver City Hall. CPFF is waiting for approval by Vancouver city for us to receive a Proclamation, and we hope to have the Mayor, Councillors, Ministers and MLAs to participate.

The summer has been both hectic but rewarding!
 
All of this is just the beginning.  The Board of Directors and I are in agreement that we must do more to empower patients, to get people more involved, and to make our organization strong, healthy, financially secure, and bold!   We are going to build new relationships and will become an organization that fights for earlier diagnoses and treatments for PF patients.
 
The beginning is HERE!
 
Sincerely,

Sharon Lee

Two fabulous women (Olivia Mendicino and Julie Ann Chiodo) cycled from Vancouver to Toronto (July 8^th to August 8^th, 2018). Despite the rain, so many of Olivia and Julie Ann’s family, friends along with the Board of Directors and our many supporters, greeted them with passion and gratitude at Sunnyside Pavilion.
 
At the time of this newsletter, Forever Lungs has raise over $34,000. Please help Olivia and Julie Ann raise $40,000 to fund two small research projects.
 
It’s not too late to still support Forever Lungs!
 
Please donate: https://cpff.ca/donations/forever-lungs/

CPFF is asking everyone to invite your family, friends, neighbours, colleagues, your MP, your MPP, and your local Councillor to all blow bubbles for someone who can’t.
 
Post your pictures of blowing bubbles onto our Facebook and twitter it out to your network with #CPFFBubbles. Tell us who you are blowing bubbles for by sending a photo and story to admin@cpff.ca
 
We’ll collect these stories to post onto our website, to share the faces of Pulmonary Fibrosis!

Attention all marathon runners! Please support CPFF by participating in this annual charity run.
 
Your customized DISCOUNT CHARITY PIN codes for race registration (in addition to applicable taxes and processing fees) will be:

• Marathon or Half Marathon ($80): 18CPFF42K
• 5k ($40): 18CPFF5K
• 5k with Stroller ($50): 18CPFF5ST

Register here:
http://www.torontowaterfrontmarathon.com/the-weekend/schedule-of-events/

Grateful son establishes Legacy Fund to honour his mother, the Parkash Kaur Ahluwalia Maloni Legacy Fund
 
Parvinder Maloni believes it was his late mother’s intervention that sent him the life-saving gift of a donor lung on Mother’s Day, 2018, five years after his diagnosis with pulmonary fibrosis. It was a medical intervention that was not available to his mother Parkash Kaur Ahluwalia Maloni, when she succumbed to the same disease in 1997 at the age of 73.



Parkash from 1994 in Montreal

“Our breath is life and my mother was the breath that gave life to her family and all the generations and friendships that came from her love. And event after death, she continues to watch over our whole family and she blessed me in my greatest time of need,” says Parvinder.
 
In honour of his mother, Parvinder is establishing the Parkash Kaur Ahluwalia Maloni Legacy Fund with the Canadian Pulmonary Fibrosis Foundation (CPFF). He is reaching out directly to his family members and friends to make donations to the Fund and he and his brother Narinder’s family will match all donations made to the Fund.
 

Donate Now

 
“Your support for this special initiative to honour my mother and the life-changing gift of a lung transplant, which I believe she has given me, will help researchers find a cure for pulmonary fibrosis."
 
My brother Narinder and I will match every dollar donated to this fund.

Parvinder & Narinder with his mother and aunts; London, England from 1970


Parvinder, Narinder with their parents, India from 1962

The Canadian Pulmonary Fibrosis Foundation is pleased to announce Dr. Kjetil Ask, McMaster University and Dr. Chris Ryerson, University of British Columbia as our 2018 grant award recipients.
 
Assessing the contribution of ATF6 in alternatively activated (M2) macrophages polarization and in the development of pulmonary fibrosis.
 
Dr. Kjetil Ask, McMaster University
 
Idiopathic pulmonary fibrosis (IPF) is an irreversible scarring disorder of the lung. Recent information suggests that specific cells called “alternatively activated macrophages” are the ones critically involved in the activation of scar-producing cells in lungs. We have shown in a moue model of IPF that a biological process increasing the size of an internal organelle in these cells is required for the activation of scar-producing cells, and when the activation is stopped, no further scarring can occur. The focus of this project is to determine if the same mechanism occurs in the human lung. We will also set up a translational science platform to investigate other biological mechanisms involved in the progression of IPF in the human lung.
 

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Biological and clinical impact of sex/growth hormones and telomere length on sarcopenia and frailty in fibrotic ILD
 
Dr. Christopher Ryerson, University of British Columbia
 
Pulmonary fibrosis leads to progressive shortness of breath that limits functionality in daily life and reduces quality of life. The combination of physical, psychological, and social deficits in patients with pulmonary fibrosis is represented by the concept of frailty, which decreases the ability of a patient to tolerate even minor medical issues. A major contributor to frailty is sarcopenia (loss of muscle mass or function), which may be accentuated by changing hormone levels as people age. Pulmonary fibrosis is also characterized by accelerated telomere (the ends of genes) shortening, which may provide a link between pulmonary fibrosis, frailty, and sarcopenia. This study will be the first to evaluate genetic, biochemical, and functional aspects of aging in patients with pulmonary fibrosis. Our primary objective is to determine whether these markers of aging have an important impact on the progressive loss of independence in patients with pulmonary fibrosis.