CPFF to co-host 1 hour Online Q&A on Pulmonary Fibrosis – May 27th
On Wednesday, May 27th at 2p.m. ET., an expert panel of respondents will answer questions about the challenges of early and accurate diagnosis, current treatment options, prospects, new treatments, as well as the prevalence and social and economic burden of pulmonary fibrosis.
You can submit your question:
- on Twitter by including #PFQA, or
- via your Facebook account using the SUBMIT A QUESTION widget www.wardhealth.com/qa/pfqa, or
- if you don’t have a Twitter or Facebook account, use the Ward Health Get in Touch form on http://www.wardhealth.com/get-touch.
View or attend the Online Q&A:
You don’t need a Facebook or Twitter account. On May 27th at 2:00 p.m. EDT, go to the event page at www.wardhealth.com/qa/pfqa
6th Annual Golf Open — July 23rd
Registration now open! For more information and/or to register and pay, go to Annual Golf Open. Register before May 31st for Early Bird Draw!
Come out and support research into this deadly disease.
See below for Upcoming and Past Events.
- Scotiabank Blue Nose Marathon – May 15-17, 2015 (Halifax) (1)
- Scotiabank Vancouver Half Marathon & 5k – Sunday, June 28, 2015 (Vancouver) (1)
- 6th Annual Golf Tournament – Thursday, July 23, 2015 (Toronto Area)
- Scotiabank Toronto Waterfront Marathon – Sunday, October 18, 2015 (Toronto) (1)
(1) CPFF is a registered charity for the above Scotiabank Marathons. If you or someone you know is interested in participating in one of the above Marathons to raise funds for CPFF, please contact Robert Davidson at email@example.com.
Read about our past events and view photos. Thank you to all for being there!
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.
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
- CPFF announces Fundraising Toolkit
- CPFF announced An Hour with Robert [due to scheduling conflicts, the launch of this program has been postponed]. Support is very important to Robert so stayed tuned for an update once Robert’s schedule opens up.
- University Health Network (UHN) in Toronto released their Breathing Life into IPF Awareness highlighting the important role that patient groups such as CPFF play in the PF Community.
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.
5th Annual Golf Open, Thursday, July 24th, 2014
Angus Glen, home of the Bell Canada 2002 Canadian Open, again provided an exciting venue with perfect weather and great golf.
Please check back for more highlights and photos from this great PF fundraising event.
2014 Scotiabank Vancouver Marathon and 5 km Race
The Scotiabank Charity challenge provides an opportunity for runners and walkers to fundraise for their favourite charity or cause. The Scotiabank Vancouver Half Marathon and 5 km race takes place annually and this year CPFF entered a team whose goal was to raise money and awareness for IPF.
On June 22, 2014 the CPFF Volunteers raised almost $10,000. Way to go and congratulations!
Thank you to all of our wonderful volunteers who ran or walked on behalf of those who can’t. We look forward to seeing you next year!
Guests enjoyed a beautiful meal, refreshments, dancing.
Stay tuned for more about this great evening as well as photos.