You may recall that last year, with the generous support of Boehringer Ingelheim, through the #kissIPFgoodbye campaign we encouraged people to share our educational videos to help raise awareness and generate donations for IPF research.
Our message reached close to half a million people through Facebook, helping us exceed our fundraising target, generating $30,000 in donations.
This year we strive to “blow” past those achievements.
Stay tuned through Facebook, Twitter and the CPFF website for the launch of the 2015 campaign on September 1st.
We’re looking for interested patients, caregivers, family members and anyone else who is affected by IPF to join us. If you are interested in participating in any or all of these activities please let us know as soon as possible.
To ensure we get a meeting with your local MPP, we need to give ample notice to their offices. If you wish to meet with government officials please ensure you provide your mailing address in your email so that we can determine your riding.
Andrew Retfalvi from Global Public Affairs is coordinating our efforts that day; please contact Andrew at email@example.com or call him at 416.886.1255 to let him know that you’ll be attending, or if you have any questions or concerns.
The first $800 of registration fees are free! First come first served. After that, CPFF will reimburse you for the registration fee if you raise over $500. If you have already registered for this event but would like to run on behalf of CPFF, you may still sign up for a fundraising account.
To register for this event, please go to: http://www.torontowaterfrontmarathon.com/en/charity/cpff.htm
For more information, please contact us at firstname.lastname@example.org.
To register for this event, please go to http://www.canadarunningseries.com/svhm/svhmREG.htm. If you’re interested in registering, contact email@example.com and he will put you in touch with the local CPFF event organizer in Vancouver.
CPFF will reimburse the registration fee for all registrants who raise $300 or more.
To register for this event, please go to http://bluenosemarathon.com/registration/. If you’re interested in registering, contact firstname.lastname@example.org and he will put you in touch with the local CPFF event organizer in Halifax.
CPFF will reimburse the registration for all registrants who raise $300 or more.
CPFF IPF Awareness Day at BC Legislature – November 18th
Read about our past events and view photos. Thank you to all for being there!
- 6th Annual Golf Tournament – Thursday, July 23, 2015 (Toronto Area)
- Scotiabank Vancouver Half Marathon & 5k – Sunday, June 28, 2015
On May 27th, 2015, CPFF and Ward Health hosted an online Pulmonary Fibrosis Question and Answer session.
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.
- 6th Annual Spring Gala — May 2, 2015 (Toronto Area)
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
- 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.