March 2019

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