For more information, please contact Andrew Parton at email@example.com.
Thank you for your support and let’s Kiss IPF Goodbye!
The run was started last year by Abigail Clarke, a young girl who wanted to raise funds in honour of her multiple family members affected by pulmonary fibrosis. This year, the event will again be held in conjunction with the 2017 Airdrie Mayor’s Run. Participants can walk/run the 3km or 1km course (wheelchairs and strollers are welcome), located at the Genesis Centre in Airdrie, AB.
The Clarke family has set the goal of $10,000 towards pulmonary fibrosis research and awareness. Please support them by running or walking in person, sponsoring a participant, or by purchasing a t-shirt.
To register to run, visit www.airdriemayorsrun.com.
For more information or to order a t-shirt, contact Shelley McDonald at 403-801-0845 or firstname.lastname@example.org, or visit the website. Thank you!
When donating, please be sure to select the CPFF as your charity when registering. All proceeds will go towards pulmonary fibrosis education, awareness, and research.
To learn more about how to get involved, please visit http://bluenosemarathon.com/charity-challenge/program/. Thank you and Sign up today!
Read about our past events and view photos. Thank you to all for being there!
Media Event: 9 am, March 29 at the Sheraton Wall Centre (Burrard Room) in Vancouver, BC
CPFF to release a report outlining the lack of support for IPF patients in BC compared to the rest of Canada.
- Lung Health Month – November 2016
The event was organized with collaboration of the CPPF, Vancouver Coastal Health–Pacific Lung Health, and The BC Lung Association. Collaboration between these various organizations lead to a high quality program.
Key IPF medical experts such as Dr. Chris Ryerson and Dr. Nasreen Khalil discussed the medical advances for IPF and the management of comorbidities that patients with IPF live with every day. Dr. Tiffany Winstone gave an excellent talk on what patients could expect when they are hospitalized.
Other key speakers discussed the day to day challenges that patients live with such as nutrition, travelling with Oxygen and Caring for the Caregivers. George Kaminsky from the CPFF introduced and explained the newly created CPFF IPF Patient Charter.
The meeting focused on helping IPF patients better understand their disease and live a better quality of life. Feedback from the meeting was very positive and everyone wants to see another meeting organized for next year making it the third year for the program.
During lunch the patients and audience members were treated to a musical rendition from Darcy Murdoch, a double-lung transplant IPF patient, who is a professional singer.
George Kaminsky, CPFF Director
The first meeting of the day was with the Health Minister, the Deputy Premier, and her Deputy Chief of Staff. We had 30 minutes to make our presentation and to hear the response from the Minister. The Minister was very receptive to our presentation. She was very attentive to our message about changing the access to oxygen standards in Alberta to be specific to IPF. The Minister then invited us back and offered to host us in the gallery of the Legislative Chamber for Question Period on another day.
The second meeting of the day was with Official Opposition Health Critic, Drew Barnes, his primary policy assistant Nathan Steinke, and MLA Rick Strankman. It was a lively discussion where the health critic asked specifically about whether the necessary treatment options were available in the province and paid particular interest to the lack of IPF-centered standards for oxygen in the province. The health critic said he would raise our issue over a dinner he had scheduled with the Alberta College of Surgeons and Physicians. He additionally offered to let our delegation help craft questions that he could ask of the Minister in Question Period in the Fall session. When the critic and the MLA left for another appointment, the policy assistant stayed behind and continued to ask questions while diligently taking notes. Again, everyone was pleased with the meeting.
While in Edmonton, the CPFF delegation had a tour of the ILD Clinic located at the Kaye Clinic at the University of Alberta. The tour was meant to show the Minister of Health and other MLAs as well as patients the importance of the clinic. Unfortunately, the elected officials were not able to make the tour. We’ll try again for another time.
Those who attended the tour were impressed with how the ILD clinic provides access to all resources in one area. When you attend the clinic for an appointment you meet with a respiratory therapist, a dietitian, and physiotherapist. Your Pulmonary Function Test is completed in the clinic. If you require an x-ray you only have to go down 3 floors in the same building. You see Dr Meena Kalluri as well as Dr Janice Richmond Eisenstat. They believe in a holistic approach where all your needs are met in the one clinic.
- PF Awareness Month – September 2016
Thank you to everyone who participated in the Kiss IPF Goodbye™ Champions program, and helped us to raise awareness about IPF.
….And the randomly selected Kiss IPF Goodbye™ Champion is….
Congratulations to Dr.. Charlene Fell from Calgary who has been randomly selected as our first ever #KissIPFGoodbye Champion! She will be awarded with a $5,000 educational grant to be put towards advancing knowledge in the field of IPF.
September 6th, 2016 — Mayor Nenshi’s Proclamation: September is Pulmonary Fibrosis Awareness Month in Calgary!
Awareness booth at City Hall, September 6th and 7th. Robert Davidson will activate the IPF Patient Charter on September 6th at 12 noon and speak about the Kiss IPF Goodbye™ Champions program. Mayor Nenshi will join the volunteers to recognize Dr. Charlene Fell and Kirk Mathison who were both nominated because of the exceptional work they are doing here in Calgary. The inaugural Kiss IPF Goodbye™ Champions program was developed to honour doctors and nurses who are helping to improve the quality of life of people living with this progressive and fatal lung disease.
The announcement of the winner by Robert Davidson and other key volunteers will be part of the program.
If you’re in Calgary during September, look for this banner on 4 pedways across busy thruways in the city!!
Dick Martin and Rayyan McDonald (8 years old) are media spokespersons for the IPF community during September to help raise awareness. On September 9th, on CTV Calgary, Dr. Fell, Kirk Matthison and Dick Martin will be discussing IPF and sharing their work and stories.
September 7th — Pulmonary Fibrosis Information Forum. The agenda includes a definition of pulmonary fibrosis, why it’s difficult to diagnose, how to manage symptoms of living with pulmonary fibrosis, importance of respiratory therapy, how music and singing can help with breathing. Stay tuned to Facebook and Twitter for images and messages from the forum.
Robert Davidson, CPFF President, will be on hand to officially launch the IPF Patient Charter.
September 13th — Awareness table at Toronto General Hospital hosted by CPFF Board Members Heather Davidson and Barbara Barr.
September 14th — IPF Awareness Day at Queen’s Park (see below for details).
On September 14, members of the CPFF visited Queen’s Park for their fifth-annual IPF Awareness Day at Queen’s Park.
This year, members of the IPF community – including President Robert Davidson, Director, Barbara Barr-Haylock, Malcolm Haylock and Jim Gillies – visited the Legislature in Toronto on September 14th to raise awareness of IPF, share the CPFF’s new IPF Patient Charter, and discuss the need for publicly-funded access to OfevFM, the second-available treatment for IPF.
While at Queen’s Park, the CPFF group 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 MPPs representing all three parties on the Lung Health Caucus. Advocates also had the opportunity to mix and mingle with each other, MPPs and their staff.
We were met with an overwhelmingly positive reception from every official we met with, and they were pleased to see our group for another Awareness Day. To that end, we were excited when, just the next week, the provincial government announced that OfevFM would be funded for IPF patients under Ontario’s Exceptional Access Program.
Over the last five years, our community has worked tirelessly to raise the profile of this disease to government decision-makers and influencers. We look forward to continuing that work across the country with our Patient Charter, with a goal of achieving a national standard of care for all IPF patients.
The CPFF would like to thank all of those involved in the Awareness Day, and we look forward to next year’s event at Queen’s Park!
IPF World, a group of European Patient Associations with whom CPFF has aligned, have declared September 17th to 25th as IPF World Week 2016. Their Breath of Hope Campaign aims to raise awareness of IPF while reminding us about the important of lung fitness/health.
The 2016 theme “Blowing soap bubbles” is a joyful activity. When you are healthy, it takes less than a second to blow bubbles. If you are a patient with IPF, this simple activity can be very challenging.
Blowing soap bubbles can be done alone or in a group/with your family/with your doctor/with your pet – one can blow big or small bubbles; one can blow them from a special location or while doing an activity.
Some initial ideas for the photo:
- Get some members of your organization together and blow bubbles
- Form the letters of IPF with people on a piece of grass while blowing bubbles
- Get a family generation together (grandparents, parents, children) and blow different sizes of bubbles
We had about 39 walkers. And a bunch more supporters come out for the raffles etc. this will be a yearly event!! Feeling so blessed. Met a couple there that has lost 3 family members to IPF. They said that the little information speech I have really open their Eyes to how horrible this disease really is. Awareness is key!
I feel so blessed. The grand total from the 1st Annual Jack Ayerst Memorial Walk to KNOCK out IPF is $4453.50
Our first year!!! Grandpa, you are truly a hero to all those you have ever met. I miss you terribly and I hope we are all making you proud!!! 💔
In 2015 Melanie mother’s Deb Desrossiers was one of the recipients of the ‘Take a Breather’ Caregiver Recognition awards. Deb was nominated by Melanie.
The Story behind The Walk
On March 3rd, 2016 my Grandfather lost his battle with IPF. He was my hero. He fought so hard. Together with my Mom and my Grandma we fulfilled his wish of being able to stay at home, instead of having to be in the hospital. We worked day and night to make him comfortable. To watch such a strong, amazing man go down so fast to this terrible disease was heart wrenching.
I reside in Port Bruce. He resided in Aylmer. Everyday, twice a day he would be down for coffee at the local Corner View Cafe — him and his “coffee club” boys. Even when he could no longer go on his own, my Mom brought him down every single day. This is why we are held the walk here. Our hope is to hold the event every year to raise funds so that research can be done and maybe better treatments or even a cure can be found. I’m proud to do this for him. His whole life he always helped anyone in need. And now, even with him not here physically, we hope to carry on his legacy.
My husband, Peter Repin, died in Oct. 2015, five years after being diagnosed with Idiopathic Pulmonary Fibrosis. (Idiopathic because no one knows the cause of this rare type of Pulmonary Fibrosis). The condition progressed slowly at first, limiting his daily activities. The last two years of Peter’s life, he required ever increasing amounts of oxygen, eventually becoming completely dependent on it to remain alive. It was a struggle he handled with such grace.
In September, I’m walking the last 100 kilometres of the Camino de Santiago in Spain in memory of Peter and to raise awareness of IPF. I’ll be wearing the Canadian Pulmonary Fibrosis Foundation T-shirts, “Breathing Should Never Be Hard Work” and “Kiss IPF Goodbye” T-shirts. Walking and biking daily so this 76 year old body can do The Walk!
The CPFF provides funds for research into causes and treatments of Pulmonary Fibrosis, an incurable disease. Presently, a lung transplant is the only option for people who qualify. The Foundation also provides support and education to patients and their caregivers.
The Foundations’ informative Newsletters, the Support Group at St. Paul’s Hospital and a local Care Giver Group were invaluable in helping Peter and our family on this unexpected journey.
Any donations to the Canadian Pulmonary Fibrosis Foundation would be appreciated. We experienced and first hand how much the Foundation benefits patients and families.
Tax receipts are available for donations of $10 or more.
- Foundation Website cpff.ca Indicate “Dawn’s Walk”
- Cheque payable to CPFF:
47 Squires Bakers Lane,
Markham ON L3P 3G8
or mail to:
PO Box 18069
Delta, BC V4L 2M4 (I will forward to CPFF for your tax receipt)
- Scotiabank Toronto Waterfront Marathon – October 16, 2016
Run for the sake of others and the Canadian Pulmonary Fibrosis Foundation in the Scotiabank Charity Challenge! June 26th in Vancouver’s Stanley Park
The Scotiabank Charity Challenge is a unique opportunity for runners and walkers in the Half-Marathon & 5K events to fundraise for the Canadian Pulmonary Fibrosis Foundation and other charities in our community.
The Canadian Pulmonary Fibrosis Foundation was founded in August 2009 by Robert Davidson 3 months before his own lung transplant; receiving charitable status from Canada Revenue Agency in October 2009.
The Mission of the Canadian Pulmonary Fibrosis Foundation is:
- To provide support to pulmonary fibrosis patients and their families as they journey through the trials and uncertainties of this incurable and fatal disease and help them advocate for and receive the health care they need:
- To raise funding for research in Canada to find causes and effective treatments for pulmonary fibrosis and, in particular but not limited to, idiopathic pulmonary fibrosis:
- To raise public awareness about the disease:
- To advocate and represent patients affected by this disease to health care professionals and governments
- To make lung transplants the last resort – not the only resort
Because Breathing should Never be Hard Work
The Mayor’s run includes:
3km Clarke family run for PF- chip timed (part of run Alberta series)(1.5km out and 1.5km back)
also- Clarke family Loop the lake for PF – non timed – fun run or stroll will be an option too!
All entry fees will support our main causes of Airdrie Aces Athletics club, Free For All Fridays youth program at Genesis place, and special olympics Airdrie.
The new in 2016 “Clarke Family run for PF “(3km timed option or the loop the lake for fun stroll)- these 2 events only will allow participants the option of collecting pledges to fund raise for CPFF to fund research for Pulmonary Fibrosis. Participants will be given option to do that should they enter into this event. All that pledged money goes to CPFF, only the entry fee for event will go toward the Mayors run other main causes.
The 500m event, 1km , 3km, and the 5km, 10km events will continue to be part of run Alberta series and sanctioned as always.
Only the loop the lake stroll will be for fun and not sanctioned.
- Scotiabank Blue Nose Marathon, Halifax, NS – May 20-22, 2016
The sun was shining and so were the students when 236 grade three and four students from Ralph McCall elementary school in Airdrie gathered together on the Monklands soccer field across from their school. Last year Abigayle Clarke’s teacher, Mr. Doyle challenged his students to think about what they could do to make the world a better place. Abbie knew that her world would be a better place if there was a cure for Pulmonary Fibrosis. Abbie stood up in front of her classmates and told her story.
Hello, my name is Abbie Clarke. I wanted to share with you why I wanted to make this race.
Eight years ago my grandpa Chris passed away from a disease called Pulmonary Fibrosis. In the past 8 years, we have lost several family members. This last year my Auntie Cathy became sick, and died. Shortly after my Auntie Shelley got sick, we were all very scared. But she got a lung transplant in March 2015.
My family seemed very scared, and sad and I didn’t quite understand what was going on. My mom explained everything but I still didn’t understand. I asked lots of questions and that helped me learn more. I found a lot of people do not know about Pulmonary Fibrosis.
I wanted to do something that I thought would help my family. I love to run, so I thought making a race for Pulmonary Fibrosis and raise money would help my family. My goal is to raise money and more importantly awareness about this disease.
The Monklands soccer field was filled with active, energetic students as they ran around the field in support of a “Me to We’ story. The involvement and encouragement of her family are testimony of their love and support.
As Dick and I handed out popsicles on behalf of the Canadian Pulmonary Fibrosis Foundation we were energized with the youthful optimism and determination of these young people. We were excited to watch these students put all their energy into running for a purpose. Our Pulmonary Fibrosis world needs the hope of children, their belief in a cause and their strength to cross the finish line.
Mayor’s Recreation for Life Run and Walk
Abigayle invites you to join her and the community on June 5, 2016 for the Clarke Family Run for CPFF in Airdrie. Collected pledges will raise funds for CPFF to fund research for Pulmonary Fibrosis. For more information, please visit http://cpff.ca/whats-happening/events/.
- Rare Disease Day – February 29, 2016
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.kissipfgoodbye.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 try really hard to make an event that everyone (not just riders) can enjoy. We hope everyone had a fun time.
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 below.
- 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.