A unique case sparks a passion for ILD research and patient care
“My interest in ILD began during my respirology elective, when I cared for a 30-year-old man with PPFE (Pleuro Parenchymal Fibro Elastosis, a rare ILD).” This is how Dr. Bohyung Min, began her application for a CPFF Robert Davidson Fellowship.
She describes how she journeyed with the patient through his acute deterioration, ECMO surgery, lung transplant, and eventually saw him walk through the door on his own two feet in the post-transplant clinic, while completing her residency in internal medicine in Edmonton.
“I was intrigued by the complexity of ILDs, the diagnostic challenges, and the opportunity to care for a wide range of patients, during my respiratory rotation,” says Dr. Min. “I wanted to know: How did this previously healthy, young man, end up in intensive care?”
CPFF initiatives and resources are gaining attention globally
The Canadian Pulmonary Fibrosis Foundation (CPFF) is working hard to build awareness of pulmonary fibrosis within diverse Canadian communities and around the world. Our Pucker Up Challenge video is available in English and French, as well as with subtitles in five additional languages: Arabic, Portuguese, Spanish, Chinese and Japanese. We encourage you to share these videos in your community, especially those who use one of the subtitled languages.
Earlier this year, Boehringer Ingelheim Global team members took part in the CPFF Pucker Up Challenge during one of their international meetings. Take a moment to watch the video they produced. The team members will be promoting the Pucker Up Challenge in their various company regions.
This spring, CPFF Executive Director Sharon Lee has been attending national and international meetings and telling others how CPFF is advocating for government support; educating patients, families and physicians; increasing public awareness and raising funds for research, to large audiences in places such as Montreal; Athens, Greece; Miami, USA; and Frankfurt, Germany.
“Pulmonary fibrosis organizations and individuals around the world are interested in a variety of our initiatives and resources,” says Lee. “For instance, at the Canadian Respirology Conference in May, we were thrilled to learn that respiratory therapist students and teachers are referring to our videos to learn about the disease and how it affects patients.”
Lee reports she is often asked if others can link to, or are permitted to translate, our resources for patients in their country. CPFF is happy to share. Especially popular resources include our recently updated Patient Guide, Intro to PF video, patient documentary, and patient videos. These resources and many more are available in our online PF Resource Library. “We are proud to be earning an excellent reputation at home and abroad for our efforts, all of which ultimately support patients and their families to live their best life,” says Lee.
Alberta government relations update
The Alberta provincial election was held on May 29 and saw the incumbent United Conservative Party (UCP) under leader Danielle Smith re-elected as Premier with a reduced majority, dropping from 63 seats to 49 (of 87 in total). The New Democratic Party (NDP) under leader Rachel Notley, increased their seat count by 15 seats.
“I want to thank all those Albertans who made an effort to educate the candidates in their riding about the needs of the pulmonary fibrosis community in Alberta,” says Sharon Lee, Executive Director, Canadian pulmonary Fibrosis Foundation (CPFF). “I hope that the Alberta Election Toolkit we prepared was helpful.”
A new cabinet will be named in the following weeks and CPFF will provide an update on who is named to the health and other portfolios. CPFF will be approaching the relevant ministers as soon as possible to educate them about the needs of the PF community in the province.
CPFF will advocate for improved access to oxygen therapy and to encourage the provincial government to negotiate with the federal government for increased funding of rare disease treatments and programs, under the federal government’s recently announced Rare Disease Program. We’ll use many of the messages that were in the Alberta Election Toolkit to make our case going forward.
We will keep you posted on any progress in this newsletter.
Two CPFF community walks honour beloved fathers
Both the Phillips family of Avonmore, Ontario, and the Khan family of Montreal, are proud to host community walk/run events this August and September, respectively, to raise funds and awareness of the rare disease that took their fathers.
David Phillips passed away on June 4, 2021 at 56 years of age, after spending four months in a Toronto hospital following a lung transplant. He was the owner of the Avonmore Berry Farm, a 300-acre, family-run farm in Avonmore, north of Cornwall and west of Ottawa and Montreal.
David was well-liked in this farming community and always wanted the best for his family and community, says his daughter Megan Brownell. He loved a good laugh. Along with his wife Pamela, he built the farm into the business it is today, with more than 100,000 people visiting for “pick-your-own” initiatives.
“He was definitely the leader of our farm business and we’ve been at a loss without him,” says Megan. “He was passionate about farming.”
“Unfortunately, pulmonary fibrosis runs in our family,” says Megan. “I have been tested and have the shortened PF gene that runs in my family, so I have a personal interest in supporting research to end this disease.”
The Khan family patriarch Jawaid Khan, 80, passed away at his home on Île Cadieux on October 1, 2022. He lived with the disease for several years, gradually deteriorating, but without ever losing his smile, positive attitude, or lust for life.
“It’s devastating to watch someone battle with this disease,” says one of his four daughters, Wendy Khan. “But in the same way he lived his life, he passed away on his terms – at home, surrounded by family.”
“He had an amazing life – he loved his work and his family,” she says. “He had a great sense of humour, was kind and generous and always welcoming. He always wanted to make sure people loved their lives as much as he loved his.”
Both families want to honour their fathers, as well as all of those who have passed away, or are currently living with the disease, and their families, with their events. They are determined to raise funds to support research and patient care and increase awareness of this rare, devastating disease.
The Avonmore Berry Farm – Run the Farm (for PF)
The unique setting of this 5 km. run/walk makes a memorable outing for the whole family. Gather together your city friends for some fun on the farm for a good cause. You can walk or run the farm trails, past marked fields and through wooded areas, or, just cheer others on. Official times will be recorded for those runners who wish to have it. Refreshments afterwards include snacks and drinks made on the farm from their produce.
Date: Saturday, August 12, 2023
Location: Avonmore Berry Farm
16365 4 Rd, Avonmore, ON K0C 1C0.
Registration: You must register by August 10, 2023 at 11:59 EST and registration requires a minimum pledge of $50.
Time: Check-in opens @ 9:30 am EST. Run starts @ 10:00 am EST
Last year the Avonmore event had more than 100 participants and raised $8,000. This year, they have set a goal of $10,000. Sign up today for a fun time on the farm and support research and awareness about pulmonary fibrosis.
Enjoy the stunning beauty of Angrignon Park in the Le Sud-Ouest borough of Montreal as you walk or run the 3.2 km route in support of CPFF. Angrignon Park has a total area of 97 hectares, including a 1.1km long lake. It is considered by the City of Montreal as one of its large parks.
Date: Saturday, September 23, 2023
Location: Angrignon Park,3400 Trinitaires Blvd, Montreal, Quebec H4E 4J3
Times:
10:00 a.m. – Check-in
10:15 a.m. – Welcome
10:30 a.m. – Walk starts
Registration: Visit the event webpage to register.
Other community walks
Two other community walks, which also honour family members, are also set for Pulmonary Fibrosis Awareness Month in September: The Clark Walk for PF in Calgary on Saturday, September 9, 2023 and the Robert Davidson Walk for PF in Markham, Ontario, on Saturday, September 16. If you are a local resident consider participating or sponsoring someone who is taking part.
Father’s Day is this weekend. It’s not too late to set up your own community walk/run this September. Maybe in honour of, or in memory, of your own father. If you’re interested, contact CPFF at [email protected].
Or, why not register for one of CPFF’s community walks, maybe as a family team? You can do this too for the CPFF Virtual Walk. Or sponsor someone else’s participation.
Shortness of Breath
Submitted by Eero Sorila
Living a healthy life changed totally in one day.
On Tuesday, July 12, 2022, I was repairing a tile floor in our back balcony. Suddenly, I was out of breath like a fish on dry land. This had never happened before in my life.
Being alarmed, I knew that something was seriously wrong with my lungs or heart. After visits to doctors, I remained in a state of suspense not knowing what was seriously wrong with my health.
“Treat me like I’m living”
That’s what Bruce Ortlieb asked his family to do, while he was living with pulmonary fibrosis. Angie Ortlieb shares this and other memories in a three-minute video, “A conversation about pulmonary fibrosis,” in honour of her father. The video is available in English and French.
After his diagnosis in 2011, Bruce wanted to live life and did not want to stop doing the things he loved, like projects around the house and yard work. As time went on, and his disease progressed, Bruce focused on what he could do, rather than what he could not, and adapted to his new normal.
“Life’s fragile and precious and the biggest lesson my father taught us, was to: “Never lose a moment and to do all the things you can do,” says Angie.
Angie remembers that lesson, as today she connects with other families, to volunteer, or help out, to raise funds for pulmonary fibrosis research and to support other families.
“It’s a very difficult disease, but things have come so far, even since my dad was diagnosed,” she says. “We need to come together. Dealing with PF can be a lonely experience. We need to support each other.”
Father’s Day is this weekend. In memory of, or to honour, your father, or another family member, consider making a donation in support of pulmonary fibrosis.
A couple of reminders
Pulmonary Fibrosis Awareness Month is fast approaching. June is the perfect month for you to approach your local town or city council, or landmark offices, to request the lighting of landmarks, such as clock towers, sports venues, fairgrounds, town halls and city signs during September.
June is also the right time to ask your local council or mayor, or your provincial premier or health minister to proclaim September as Pulmonary Fibrosis Awareness Month. You can find sample request letters and proclamations from last year on our website.
These requests are most successful when made by local residents, rather than the Canadian Pulmonary Fibrosis Foundation (CPFF). For lighting requests, please suggest red and blue lighting, or just red, if only one colour is available. These colours represent the oxygenation of blood from blue to red, which is done by our lungs.
Please send an email to [email protected] to let CPFF staff know that you have made such a request, along with a copy of the request for a landmark lighting or proclamation. This will help prevent duplicate requests from multiple residents.
Also, a reminder that there is no issue of Hope Breathes Here in July. Follow us on Instagram, Facebook and Twitter for updates until our next issue coming on August 2, 2021. News updates may also be sent to you via email as required. Have a lovely summer!
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