Copy
A Message from Kirk Morrison, CPFF President:
All,
It’s hard to believe that we’re drawing near the end of the first quarter of 2019! I’ve heard from a number of you (including my mother!) that you would like to see more frequent newsletters from us. My apologies for this (and we’ll strive to do better going forward), but I can assure you that the length of time it’s taken to get our first 2019 newsletter out, is a reflection of the amount of work that has been going on at CPFF. There’s been a lot!

Just a few thoughts on our accomplishments over 2018, and our plans for 2019. In doing this, I’ve tried to align my comments with our 4 pillars of focus, namely Awareness, Support, Research and Advocacy.

Awareness
Our goal is to both educate and raise awareness about PF amongst our communities, the medical profession, and within government. In 2018, we hosted and participated in a number of events designed to do this. These included:
  • Government proclamations, organizing lighting up of buildings, and a bubble blowing campaign in September in conjunction with PF Awareness Month.In 2019 we intend to make this an even higher profile campaign, and will be looking for your support in doing so.
  • Participating in and support of special events to both raise awareness about PF and funds to support the PF Community and our organization. These included Kerry Spavor’s Machu Pichu trek in the spring, the Forever Lungs Cross Canada Bike Tour in the summer, the Clarke Walk for PF and the Scotia Bank Marathon in the fall, and the Parkash Kaur Ahluwalia Maloni Fund fundraiser in the winter. This high level of activity will continue in 2019 with an appreciation event planned for the Maloni fundraiser donors in Montreal later this month, and continued participation and support of both the Scotiabank Marathon and Clarke Family Walk in the fall. Special mention and thanks to the Clarke family who are making the walk a standalone event in September in Calgary.
As well, in 2019 we intend to do a major upgrade of website to make it more current and user friendly, which will hopefully make it easier for people to obtain information. As well, we will “amp up” our social media presence to get the news out about PF.

Support
Our second pillar of focus in to support PF patients and caregivers. Historically we have accomplished this through our support of Patient Support Groups across the country. In 2018 we were very fortunate to add the Niagara support group, and earlier this year we assisted in starting up the St. John’s, NF Patient Support Group. This brings the total number of PF Patient Support Groups across Canada to 16. Our goals for 2019 are to continue to both increase the number of PSG’s, as well as to develop our technology to facilitate remote attendance at PSG meetings, for those who can’t travel.

Research
We were extremely successful in this area in 2018. Through the fundraising activities associated with Forever Lungs, and Kerry Spavor’s trek, along with the support of our valued industry partners Boehringer Ingelheim (BI) and Roche, we were able to award 2 - $90,000 research fellowships and 2 - $20,000 research grants. We expect to continue this same level of research support in 2019, using the funds raised by the Maloni family, and our continued support from BI and Roche. 

An important contributor to this research was the work of our Medical Advisory Board, chaired by Dr. Charlene Fell, who reviewed and advised on the research applications received. We look forward to engaging the MAB more frequently in 2019.

Advocacy
Our fourth and final pillar is to “Be a Voice for Patients and their Families”. In 2018, we had a major accomplishment early on in the year, when Esrbriet was approved for use in British Columbia. In 2019, we will be looking to establish stronger relationships with the provincial health ministries, and in particular, take a more active role in addressing the challenges, inconsistencies and inefficiencies in the accessing oxygen locally.

Operations
Finally, a few comments on operations.  2018 was a milestone year for us as we brought on Sharon, our first full time staff member.  There is a lot of work to do to both properly serve a growing PF community, and support our four pillars. The Board feels that there is a level of activity and opportunity that cannot be supported by volunteer directors, and necessitates bringing on paid staff. Through our first year of having staff, we operated efficiently and maintained the strong balance sheet and financial position that Robert and Heather established.

In 2019, we expect to add additional staff to support both outreach and fundraising, which I can assure you that will be done in a financially responsible manner. They key to the success of any non-profit organization is to operate sustainably, and I can assure you that this will be front and centre in the Board’s eyes.
Finally, I would like to thank everyone for their support over my first year. It is a honour to serve the PF community, and I look forward to meeting more of you in 2019.

Please do not hesitate to contact me if you have any questions or require any information.

Best regards,

Kirk Morrison
A Message from Executive Director,
Sharon Lee:
 

Dear CPFF Supporter,
Thank you for subscribing to our newsletter. We strive to present the most useful and interesting information in each issue - if you have suggestions or ideas to share, feel free to contact us. Input from you is important.
 
The newsletter is sent around the first of each month, give or take a few days.
 

If you haven’t signed up yet, click here https://cpff.ca/
 
Thank you for continued support of CPFF!
 
Best Regards,


 

Sharon Lee
Executive Director, CPFF
 
Like us and follow us on Facebook. Share our posts with your family, friends and colleagues!
CLICK HERE TO MAKE A DONATION
Canadian Pulmonary Fibrosis Foundation (CPFF) is pleased to announce our 2019 Robert Davidson ILD Fellowship Award and CPFF Small Research Grants.
 
Click here to share the link: https://cpff.ca/research/
 
It’s because of your support of our events like the Forever Lung event hosted by Olivia Mendicino and Julie Ann Chiodo, the Parkash Kaur Ahluwalia Maloni Fund hosted by the Maloni brothers, Parvinder and Narinder, which raised in total $110,000 that we are able to support research and ILD Fellows in Canada.
Parkash Kaur Ahluwalia Maloni Fund Update
 
Congratulations to Parvinder and Narinder Maloni!
 
They have successfully raised $70,000 in honour of their mother Parkash, which will support CPFF’s small research grants.
 
Brothers Parvinder and Narinder Maloni will be hosting a thank you luncheon for their family, friends and colleagues who donated to the Parkash Kaur Ahluwalia Maloni fund.
 
CPFF Board Chair and President, Kirk Morrison and CPFF Executive Director, Sharon Lee will be attending this event, along with Board member Ranjena Maloni (Narinder’s daughter). We are grateful for their support and will take this opportunity to thank them in person.
 
Date:                    Saturday, March 16, 2019
Location:              Pür&Simple
(8 minute taxi from Montréal-Pierre Elliot Trudeau Airport)
                             475 Avenue Dumont
                             Dorval, QC H9S 5W2
Time:                    1:00 pm to 4:00 pm
Calling for volunteers!
 
The Canadian Pulmonary Fibrosis Foundation needs your help to support our four 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.
We do not receive government funding and must raise funds to support all of our work. Please contact our Executive Director, Sharon Lee at sharon@cpff.ca if you’re able to help out on any of the projects below.
 
Scotiabank Charity Challenge
  1. Montreal – April 28th, 2019
  2. Halifax – June 9th, 2019
  3. Vancouver – June 23rd, 2019
  4. Toronto – October 20th, 2019 
We need volunteers to help solicit walkers and runners for the above events who are also willing to collect pledges. Our goal is to raise $15,000 at each event.
September Pulmonary Fibrosis Month

  • Blowing Bubbles with the hashtag #CPFFBubbles
    • Invite your family, friends and colleagues to blow bubbles with you and post (pictures and videos) onto our Facebook.
    • Share your story of who you are blowing bubbles for, by sending your story and pictures to admin@cpff.ca
    • Contact media in your community for them to interview you and take pictures of you and your group in blowing bubbles and raise awareness on pulmonary fibrosis.
       
  • Lighting up buildings across Canada
    • Volunteer to ask various landmarks in your province, city, neighbourhood to light up in Red and Blue to promote awareness of pulmonary fibrosis. Contact Sharon Lee at sharon@cpff.ca and she’ll send you our form letter for you to make the request.
Province City Landmark Action by
British Columbia Vancouver BC Place Stadium  
  Vancouver Telus World of Sciences  
  Victoria Empress Hotel  
  Victoria Parliament Building  
  Whistler Fitzsimmons Creek Bridge  
       
Alberta Calgary Calgary Tower  
  Edmonton High Level Bridge  
       
Ontario Toronto CN Tower  
  Niagara Falls Niagara Falls  
  Fort Erie Peace Bridge  
  Port Credit Lighthouse  
  Hamilton City Hall Hamilton Sign  
  Toronto City Hall City Hall Building  
  Toronto City Hall Toronto Sign  
       
Nova Scotia Mahone Bay 3 Churches  
  Cape Breton Fiddler  
  Halifax Halifax Metro Centre  
  Halifax City Hall  
       
Newfoundland & Labrador St. John’s Signal Hill  
  St. John’s Confederation Building  
       

  • Provincial Proclamation declaring September Pulmonary Fibrosis month on behalf of CPFF
    • Contact Sharon Lee at sharon@cpff.ca and she’ll work with you in making the request to have your province and city declare September as Pulmonary Fibrosis month on behalf of CPFF.
       
  • Patient Support Group Leaders are needed!
    • Contact Sharon Lee at sharon@cpff.ca and she’ll work with you to start a pulmonary fibrosis support group in your community. Support group is a great way to network with other pulmonary fibrosis patients and their caregivers on how to manage this disease and moral support to each other.
Clarke Family Walk for Pulmonary Fibrosis in support of Canadian Pulmonary Fibrosis Foundation (CPFF).
 
Sunday September 15, 2019
In 2007, Abigayle Clarke’s grandpa Chris passed away from a disease called Pulmonary Fibrosis. In the past 12 years, Abbie has lost several other family members, including her Auntie Cathy and cousin Johnny Clarke who all died from Pulmonary Fibrosis.
Abbie also has a cousin Rayyan who was diagnosed with pulmonary fibrosis at the age of one and has been battling the disease for the last 9 years and is on oxygen 24/7.
Shortly after the passing of Cathy, Abbie’s Auntie Shelley (Rayyan’s mother) got sick with pulmonary fibrosis, which led to a lung transplant in March 2017. All of this made Abbie really scared and sad, as she didn’t quite understand what was going on. Her mother, Amanda Clarke explained everything, but Abbie still didn’t understand.
She asked lots of questions and that helped her learn more. Then Abbie discovered that there were a lot of other people who did not know about Pulmonary Fibrosis.
Abbie decided to do something about this terrible disease by organizing a run/walk to help Canadian Pulmonary Fibrosis Foundation (CPFF) to raise awareness and funds to hopefully find a cure.
 
Please join Abbie and her family on Sunday September 15, 2019 to help raise awareness and funds to continue our work. Click here: https://cpff.ca/donations/clarke-family-walk-for-pf/
CLICK HERE TO MAKE A DONATION

Breathing Should Never Be Hardwork

Whether a patient, a caregiver, a family member, or a close friend join our Facebook Support Groups:

Canadians Living with Pulmonary Fibrosis

Support for Toronto General Lung Transplant Recipients and Caregivers
Our mailing address is:
Canadian Pulmonary Fibrosis Foundation
47 Squire Baker's Lane
Markham, Ontario
L3P 3G8

sharon@cpff.ca
905-294-7645

Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.