- Rare Disease Day – February 29, 2016
Read about our past events and view photos. Thank you to all for being there!
In addition to our weekly ‘Breather” recipient announcement, throughout November from Monday to Friday we will be posting facts and information about lungs and PF especially IPF on Facebook. Be sure to follow the CPFF Facebook Page.
Special IPF segment on CTV’s Canadian Health & Family with Dr. Marla Shapiro. Tune in on Saturday, November 21st, at 10a.m. local time. The episode will feature Dr. Charles Chan, IPF Researcher & Respirologist at University Health Network, Toronto in a special segment about IPF. Check your local listings for your air time.
Thank you CTV and Canadian Health & Family
In advance of November 21st, Canadian Health & Family have shared the following videos so that CPFF and the PF Community can share them with family and friend as the goal is to spread awareness to as many people as possible.
In this 1-minute segment for , Dr. Charles Chan speaks about the importance of Early Diagnosis for IPF. Early Diagnosis of IPF
In another 4-minute segment, Dr. Chan speaks about Living with IPF including current drug therapies and the importance of Early Diagnosis for IPF. IPF Patient Barry Williamson shares his experience Living with IPF and how it affects both the patient and the caregiver. Living with IPF
We’ve had a great response and unfortunately have reached capacity for the MLA meetings. All those who have already contacted either Rod or Candace will be contacted shortly re participating in the reception.
As part of National Lung Health Month, CPFF will be participating in a day at the Alberta Legislature bringing awareness for PF and IPF patients and caregivers.
The Awareness Day is a chance for Alberta-based IPF patients and their families to continue to raise awareness of IPF among legislators and policy-makers. We are looking forward to Robert and Alberta advocates working in partnership with The Lung Association, Alberta & NWT on November 25th and will provide a full report on this advocacy in the coming weeks!
Thank you for such a great response!
A special thank you to Innis Ingram and his friend Cpl. Richard Holmes (Ret) who ran in the Angus Glen 10K run on Sunday, November 8th for Innis’ mother, Kathryn Robertson, who was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in 2008. The two also ran to raise much needed awareness for IPF and the Canadian Pulmonary Fibrosis Foundation (CPFF). Read Innis’ personal story here
In total, our 9 IPF Advocates met with 16 MLAs throughout the day, and were introduced in the Legislature before Question Period again this year by MLA Jane Thornthwaite whose constituent Doug Barber is a CPFF board member and IPF advocate.
Unfortunately, CPFF President Robert Davidson was unable to attend due to surgery he had earlier in the fall but CPFF board member George Kaminsky was able to recruit eight other patients and advocates to join him for a total of nine delegates at the IPF Awareness Day in Victoria, British Columbia. George Kaminsky and Doug Barber delivered excellent informative presentations at the government breakfast reception about the CPFF, IPF and British Columbia’s refusal to provide patients with the access to treatment they so desperately need. We also had two IPF patients currently waiting for transplants who require the use of oxygen come up to the podium and share their heartfelt personal stories asking for access to treatment today.
The meetings were targeted at several MLAs who are members of the Select Standing Committee on Health including both the Chair and the Deputy Chair, in addition to the Opposition Health and Seniors Critics. The Minister of Health was unable to meet due to an offsite announcement that had him away from Victoria but our consultant Dayna had the opportunity to meet privately with his Chief of Staff and the Minister’s Office has agreed to have a conference call with Robert when the Minister is available later in the Fall.
Below is a list of all the MLAs the CPFF was able to meet with at their reception and throughout the day.
Key targeted meetings:
BC Liberal MLA Dr. Daryl Plecas, Parliamentary Secretary to the Minister of Health for Seniors and Member of the Select Standing Committee on Health
- BC Liberal MLA Dr. Moira Stilwell, Member of the Select Standing Committee on Health
- BC Liberal MLA Donna Barnett, Member of the Select Standing Committee on Health
- BC Liberal MLA Ralph Sultan, local MLA for George Kaminsky (CPFF board member and IPF patient) and former Minister of State for Seniors
- BC Liberal MLA Jane Thornthwaite, local MLA for Doug Barber (CPFF board member and advocate)
- BC Liberal MLA Linda Larson, Chair of the Select Standing Committee on Health and former Parliamentary Secretary to the Minister of Health for Seniors
- BC Liberal Minister of Forests, Lands and Natural Resource Operations Steve Thompson
- BC Liberal MLA Marvin Hunt
- BC Liberal MLA Laurie Throness
- BC Liberal MLA Richard Lee
- BC Liberal MLA Linda Reimer
- BC Liberal MLA Jane Thornthwaite
- BC Liberal MLA Simon Gibson
- BC NDP MLA Judy Darcy, Health Critic and Deputy Chair of the Select Standing Committee on Health
- BC NDP MLA Maurine Karagianis, Seniors Critic
- BC NDP MLA Gary Holman
We are grateful to these MLA’s who devoted so much of their time to our delegates
Overall, the CPFF advocates were incredibly well received, and their delivery of their personal stories and requests for access to treatments and choices were delivered loud and clear. Several of the MLAs the CPFF met with the delegates last year when CDR had not yet recommended a single drug therapy for treatment and were eager to hear that now there were two choices recommended for listing and excited to learn about OFEV. Several also offered their full support in any upcoming advocacy efforts, if required.
Overall, it was a successful day and the delegates were pleased to be a part of it!
Cherie Banbury and her family have two very good reasons to help raise funds for the Canadian Pulmonary Fibrosis Foundation, particularly for IPF research. Cherie’s mother was diagnosed at age 53 and after a double lung transplant succumbed to the disease 3 years later. Cherie herself has been diagnosed in June of this year, just one month shy of her 40th birthday. Cherie’s full story will be featured shortly on the CPFF website under patient stories.
Cherie, pictured with the purple head and and long purple sleeves under her CPFF t-shirt, along with family and friends participated in the Scotiabank Toronto
Waterfront Marathon this past October to raise funds and awareness for IPF. Cherie was joined by her husband Joel Banbury, Kate Pelton, Adam Pelton, William Pelton, Sandra
Chen, Gavin Andrews, Justin Andrews, Trynee Hancock, Amita Dayal, Tanya Puckrin, Brett Puckrin, and Elizabeth Blue in running the 5k. Sara Ashton and Jodi Janwin ran the half marathon and Chris Hart ran the full marathon. Congratulations to Cherie and her team who raised a very impressive $4095. Well done and thank you!!
A Successful IPF Awareness Day at Queen’s Park for the CPFF!
In September, the Canadian Pulmonary Fibrosis Foundation visited Queen’s Park for the fourth-annual IPF Awareness Day.
This year, members of the IPF community visited the Legislature to update MPPs of exciting
new developments in treatments, most notably the recent Health Canada approval of OFEV – the second-available treatment in Canada for IPF. Canadians now have choice of treatment.
We’d like to thank Jacqui Bowick-Sandor, her husband Bruce, Barbara Barr and her husband Malcolm Haylock for attending meetings throughout the day, and for their excellent advocacy efforts on behalf of Ontario IPF patients.
As many know, IPF is a progressive and ultimately fatal disease that causes swelling and scarring of the air sacs and tissue between the cells of the lungs restricting the patients’ ability to breathe. It affects approximately 10,000 to 15,000 people in Canada.
While at Queen’s Park, CPFF advocates met with several new and returning MPPs – specifically targeting MPPs who sit on the Lung Health Caucus. To finish the successful day, the CPFF hosted an evening reception where they welcomed remarks from MPP Kathryn McGarry and Dr. Martin Kolb, a noted respirologist and IPF expert from the Firestone Institute for Respiratory Health (FIRH), St. Joseph’s Healthcare in Hamilton and Associate Professor at McMaster University. Advocates also had the opportunity to mix and mingle with each other, MPPs and their staff.
Over the last four years, both the CPFF and IPF community have worked tirelessly to raise the profile of this disease to government decision-makers and influencers. As such, many MPPs have become champions for their local IPF patients by raising questions and statements in the Legislature, introducing petitions and writing directly to the Minister of Health on behalf of their constituents.
The CPFF is continuing to advocate on behalf of IPF patients everywhere for access to all available treatments for this devastating disease, because breathing should never be hard work.
Kiss IPF Goodbye™ Awareness campaign 2015
We have now concluded another successful IPF Awareness Month and the launch of Kiss IPF Goodbye for the second year, launched in partnership with Boehringer Ingelheim (Canada) Ltd. and the Canadian Pulmonary Fibrosis Foundation (CPFF) A big thank you goes out to everyone in the IPF community who helped to support the campaign and did their part in helping to spread awareness and raise funds.
To kick off IPF Awareness Month on September 1, we introduced an online “Giffing Booth” and a new website, www.kissipfoodbye.com, where Canadians could log on and create their own GIF, a 3-second looping video, to help #kissIPFgoodbye. For each GIF created and shared on social media, or use of the hashtag, $1 was donated to IPF research.
Nik Stauskas, a Canadian basketball player who plays in the NBA for the Philadelphia 76ers, shared his experience of being
touched by IPF – his grandmother was diagnosed five years ago. Nik conducted a total of 26 interviews with media in Toronto, Calgary, Vancouver and Montreal over the course of three days, to help spread the word about Kiss IPF Goodbye™ so other families can recognize the signs and symptoms.
Finally, we took a live ‘Giffing Booth’ to the streets with local events and street teams in Toronto, where Canadians could make their own GIF. The IPF community also got involved and created their own local events in Ottawa and Calgary.
We also had the opportunity to bring the ‘Giffing Booth’ to Queen’s Park Awareness Day on September 15 where our advocates met with MPPs and their staff throughout the day to discuss the importance of patient choice and access to all approved treatments for IPF.
In total, $15,000 was raised to support IPF research during the campaign. Overall, nearly 2,000 GIFs created and shared using the hashtag #kissipfgoodbye. More than 34 million people in total were reached in Canada with nearly 4.5 million of those on Twitter.
We were thrilled to see so many kisses make a difference for the IPF community and for the once again tremendous success of the campaign.
Advocates went to City Hall during the last week of September to raise awareness about #IPF.
Great job and thank you!
An expert panel answered a variety of questions about the challenges of early and accurate diagnosis, current treatment options, clinical trials, exercise, incidence of the disease, and others.
Please take a minute to scan the questions and answers at #PFQA – Pulmonary Fibrosis Question and Answer to find what you need, or start from the beginning and go through all the Q & As. The information is current and very informative.
A BIG THANK YOU TO NOVA SCOTIA AND THE KENNEDY FAMILY!
This year marked the Canadian Pulmonary Fibrosis Foundation’s fifth year participating in the Scotiabank Blue Nose Marathon Charity Challenge. During the long weekend in May, CPFF supporters laced up their sneakers to raise funds and awareness for our organization. In 2015, almost $6,000 was raised through this initiative alone.
A big thank you to the Kennedy family from Sydney, Nova Scotia who have led this initiative for us each year to date. Peter Kennedy was diagnosed with IPF in 2007 and was fortunate enough to receive a double lung transplant in April 2013.
With his wife and three daughter by his side, his family has helped raise a total of $55,000 over the past five years.
A Successful day at Queen’s Park for IPF!
On Tuesday October 21, 2014 the Canadian Pulmonary Fibrosis Foundation visited Queen’s Park for its 3rd Annual IPF Awareness Day. Normally held in September during PF Awareness Month, this year’s event had to wait until the Legislature returned after the election.
This year, the IPF community descended upon the Legislature to update MPPs of the exciting news surrounding Ontario’s recent decision made to fund Esbriet – currently the only available treatment option for IPF – through the Exceptional Access Program effective August 19, 2014.
As many know, IPF is a progressive and ultimately fatal disease that causes swelling and scarring of the air sacs and tissue between the cells of the lungs restricting the patients’ ability to breathe. It affects approximately 5,000 to 8,000 people in Canada.
While at Queen’s Park, advocates met with several new and returning MPPs – specifically targeting MPPs who sit on the Lung Health Caucus. To finish the successful day, the CPFF hosted an evening reception where Robert Davidson, President and Founder of the CPFF thanked all guests for attending. Advocates also had the opportunity to mix and mingle with each other, Ontario Lung Association representatives, MPPs and their staff.
Over the last several years, both the CPFF and IPF community has worked tirelessly to raise the profile of this disease to government decision makers. As such, many MPPs have become champions for their local IPF patients by raising questions and statements in the Legislature, introducing petitions and writing directly to the Minister of Health on their constituent’s behalf.
The CPFF is grateful to all those who made this possible and it is because of your efforts, IPF patients in Ontario are able to breathe a little bit easier now.
While the public funding of Esbriet in Ontario is good news for IPF patients in the short term, a permanent solution is needed for all patients in Ontario and across Canada who could benefit from this treatment before their time runs out.
Thank you to all who attended our incredibly successful 3rd IPF Awareness Day at Queen’s Park and let us continue to champion this cause until all eligible IPF patients receive the treatments they deserve on a permanent basis.
We are grateful for those that supported the event, including, the instructors, riders and non-riders, event volunteers, food and raffle donors, people who bought raffle tickets and people who donated to CPFF.
Donations are still coming it, and because of all of you we were able to raise over $21,000! The three “Rides” have raised over $66,000 for the Canadian Pulmonary Fibrosis Foundation.
We hope to see you on October 23rd, 2015 for the 4th Annual Rob’s Ride.
Rob, Katharine, Julia and Marisa
Oakville’s Rob’s Ride nets more than $20K for Canadian Pulmonary Fibrosis Foundation. – Oakville Beaver (ON – Nov. 7, 2014)
- Thank you to everyone who shared during the #kissIPFgoodbye campaign launched September 18th. Social media was alive with the campaign kicked off by actress and IPF ambassador Rose McGowan who was in Toronto on a media blitz. Google Rose MCGowan #kissipfgoodbye to see how Rose helped to build IPF awareness.
- Team CPFF attended ICLAF 2014, bringing the #kissIPFgoodbye campaign to share with researchers and clinicians from around the world. Check out photos on the CPFF Facebook page.
- CPFF launched monthly eNewsletter to help keep our PF community informed. To receive future eNewletters and other important updates from CPFF, register your email at Staying Informed.
- CPFF updates Pulmonary Rehabilitation and Exercise webpage to include in-patient rehab programs PLUS Exercise and Pulmonary Fibrosis article from Toronto General Hospital physiotherapist Lisa Wickerson.
- David and Shelly Rasmussen saw an opportunity and took the initiative to increase PF awareness when they saw an announcement for an event in Edmonton. Initially diagnosed with suspected IPF, David underwent a VATS biopsy earlier this year and his diagnosis was changed to pulmonary fibrosis secondary to Sjogren’s Syndrome. We hope to hear more from David and Shelly about their journey to the accurate diagnosis. To read more about their PF Awareness booth, see Shelly’s comments and more photos below.
- In August 2013, Caden Hart started his quest to raise PF awareness in memory of his Granny Rita. Caden’s mom commented in Caden’s Quest that Caden again this year was successful in raising awareness and donations for CPFF to put towards research in Canada.
- Calgary South Health Campus Hospital’s PF Support Group set up a booth at the South Health Campus Community Health+Wellness Expo Sep 5-6.
- 3rd Ontario IPF Awareness Day had to be postponed to October 21st when the Legislature returns to Queen’s Park. This year CPFF and IPF advocates will be thanking their MPPs for being the first province to cover Esbriet and continuing to advocate for disease awareness. To read more, open the section above.
- Thank you to all who in big and just as important small ways helped to create PF awareness in September. Keep tuned for further news on the #kissIPFgoodbye campaign — PF awareness is not just for one month each year!
- IPF World Week is September 28th to October 5th
David and Shelly Raise PF Awareness in Edmonton
When my husband and I saw the announcement of our town’s annual “Open House and Active Living Fair” we decided that it would be the perfect place to have a “PF Awareness” booth at. It was very short notice but the organizers of the event were thrilled to hear of our interest and gave us a table free of charge. After a flurry of emails of support and an overnight UPS package from CPFF (thanks so much for the great materials) we were able to put together something that we’d hope would attract attention and help spread awareness of this horrible disease.
In the end, with the exception of one person, no one else had ever heard of PF/IPF and the toll it takes on so many Canadian. It was a “grass roots” start but in the end that’s how most awareness starts. A number of people are now more aware of PF/IPF and that awareness will hopefully spread out like ripples in a pond.
I recommend that anyone who has the chance to do what we did try it. It really wasn’t that hard and there is a level of satisfaction knowing that we are at least “doing something”.
Shelly and David Rasmussen, Morinville, AB
“Make every breath count!”
Click on any photo below to enlarge.