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September 2016 eNewsletter

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September is PF Awareness Month


September is Pulmonary Fibrosis Awareness Month and to mark the occasion the CPFF has some special activities planned. Please see the various articles below as well as our FaceBook page and Twitter for regular updates and the Events page on the CPFF website..
 
If you are planning an event in your community, please post information about it on our Facebook page and Twitter (@The_CPFF).  To like us on Facebook or follow us on Twitter, you can either use these links or those in the Newsletter footer.
 
What you can do to be part of September Awareness Month
 
As an individual affected by IPF, there is something you can do. We have created a standard letter to the editor (click on link to download file) and encourage you to send it to your local newspaper or other local media outlets. The letter promotes the IPF Patient Charter (see Charter article). Feel free to customize it to include aspects of your personal story.
 
Why is awareness about IPF important? According to Dr. Martin Kolb, IPF is a relatively rare disease compared to other lung diseases (such as asthma, COPD or cancer) and awareness of IPF has therefore been low. Organizations like the CPFF together with expert physicians are working hard to change this and always need the help of affected patients and their families. With more awareness comes more research funding, which is instrumental in learning more about the complex biological process underlying IPF. Knowing the biology is key to developing new drugs that hopefully will stop the progression of IPF once and forever.

Become involved!  Take Action!  Check out the CPFF PF Awareness Call-to-Action page.


Help Spread the Word      


The Canadian Pulmonary Fibrosis Foundation (CPFF) developed the Idiopathic Pulmonary Fibrosis (IPF) Patient Charter to inform government, healthcare professionals and all Canadians impacted by IPF about the need for access to optimal patient care from diagnosis, to treatment, to end-of-life.
 
The IPF Patient Charter outlines recommendations for provincial governments, institutions and healthcare organizations to improve patients’ overall quality of life, and support efforts for targeted research to develop better long-term treatments, and ultimately, find a cure.
 
But, the IPF Patient Charter is just a document if we don’t all work together to raise awareness, spread our message, and call on those who can help to make a difference, such as your Member of Provincial Parliament (MPP), Member of the Legislative Assembly (MLA) or Member of National Assembly (MNA), Minister of Health and other elected and non-elected government officials, healthcare providers, insurance providers, and media.
 
Robert Davidson, President, CPFF, and others will activate the IPF Patient Charter by presenting it to patients and healthcare professionals at various meetings and events across the country, beginning in Calgary on September 6th and Edmonton on September 7th, during PF Awareness Month.
 
To view the Charter and find out how you can help, visit IPF Patient Charter to find out how you can help. We will be posting more information about the IPF Patient Charter on Facebook and Twitter as well as our website and upcoming newsletters.
 
This is a significant undertaking by the CPFF and we hope you’ll join us to help spread the word!

Regional PF Awareness Activities


A special shout out goes to the committed and passionate volunteers across Canada that are stepping up to raise awareness for PF this month. We acknowledge that some of these events have taken place; we had to keep them secret until the official launch of the IPF Patient Charter. Please check Facebook and Twitter as we encourage everyone involved in awareness activities to share with the CPFF community using these social media platforms.
 

Calgary, AB

September 6th -- 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.


Edmonton, AB


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.
 

Toronto, ON 


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).
 

BC 


We have made a submission to the BC government for an IPF Awareness Month Proclamation. We are awaiting a response. Stay tuned to Facebook and Twitter for updates.

 

KNOCK OUT IPF —
A granddaughter's tribute to her hero 

 
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. 

In his honour, we are having the 1st Annual Jack Ayerst Memorial Walk to KNOCK OUT IPF in Port Bruce, Ontario. To view flyer, click on image on right.

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 holding 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. 

Melanie Ayerst

ICLAF 2016 — Dublin, Ireland — Sept 24 - 28 

 
The International Colloquim on Lung and Airway Fibrosis (ICLAF) is an international conference held every 2 years that brings together the world’s leading clinicians and researchers on IPF. Once again, Robert Davidson will attend to represent CPFF and the patient perspective. Two young researchers sponsored by CPFF, Dr. Pierre Bellaye of McMaster and Dr. Tiffany Winstone of the University of British Columbia will accompany Robert; we reported their research topics in our July newsletter.  We look forward to what all 3 have to report following their return.

Celebrating Kiss IPF Goodbye™ Champions across the country


Thank you to all of you who participated in the Kiss IPF Goodbye™ Champions program! The program is now closed, but what a success it has been with 56 nominations, including 36 different doctors and nurses from across the country recognized by you as Kiss IPF Goodbye™ Champions.  
 
We launched the program in April, to raise awareness about IPF, and shine a light on Canadian IPF doctors and nurses who work tirelessly to improve the quality of life of people living with this disease. You have shown us through your nominations, that these healthcare providers have made a significant, positive impact on IPF patients, their families and caregivers through commitment, care and an ongoing desire to make a difference for the IPF community.
 
We have selected one name at random who will be awarded with a $5,000 educational grant to be used to advance knowledge in 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 Kiss IPF Goodbye™ Champion! She will be awarded a $5,000 educational grant to be put towards advancing knowledge in the field of IPF.
 
This program is supported by a grant from Boehringer Ingelheim (Canada) Ltd.
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.



In addition to your own Facebook page, you can share your photos on the CPFF Facebook or Twitter (@The_CPFF) pages with the hashtags #CPFF #IPFWORLD #IPF.

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 

IPF Awareness Day 
– Ontario Legislation, Wed., Sept. 14th
 

 
As a part of our awareness activities, the CPFF will be hosting the fifth annual IPF Awareness Day at Queen’s Park on September 14th, 2016. Our Awareness Day is a chance for Ontario-based IPF patients, families and caregivers to continue to raise awareness of IPF among provincial legislators and decision-makers, and to promote the CPFF’s new IPF Patient Charter.
 
Throughout the day, we’ll hold meetings with MPPs, be recognized in the daily Question Period, and hold an evening reception with MPPs and their staff. We’re looking for interested patients, families, and anyone else who is affected by IPF to join us that day; if you would like to participate in any of the activities – whether meeting with your MPP or joining us for the evening reception, please reach out to us as soon as possible. We’d love to include you!
 
Andrew Retfalvi of Global Public Affairs is supporting our efforts that day. All attendees must be registered with Andrew in advance in order to attend. If you would like to attend or if you have any questions, please reach out to Andrew directly at 416-886-1255 or at aretfalvi@globalpublic.com.

 

Dawn's Walk — One woman's tribute to her husband 

 
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.

This 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 “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 first hand how much the Foundation benefits patients and families. Tax receipts are available for donations of $10 or more.
  • Foundation Website http://cpff.ca/get-involved/donate/. Please indicate “Dawn’s Walk”.
  • Cheque payable to CPFF - 47 Squires Bakers Lane, Markham Ontario L3P 3G8 or mail to Dawn Repin, PO Box 18069 Delta BC V4L 2M4 and I'll forward to CPFF for your tax receipt.
Dawn Repin

CPFF Board of Directors 

 
To see our up-to-date Board of Directors, click http://cpff.ca/who-we-are/board-of-directors/.

The CPFF Board  will meet on October 3, 2016 in Toronto for a full-day meeting and workshop to develop a strategic plan for the next 3-5 years. Other stakeholders will be joining us for this important work. Please stay tuned for exciting information about new programs and initiatives.


Vancouver, BC

Sep 20th (Tues)
Nov 8th (Tues)
 

Calgary, AB

Sep 6th (Tues)
Oct 4th (Tues)
Nov 1st (Tues)
 

Edmonton, AB

Sep 20th (Tues)
Oct 18th (Tues)
 

Toronto, ON

Sep 27th (Tues)
    - Guest speaker: Debbie Couts, Respiratory Therapist (How can I exercise if I am short of breath?)
Please RSVP to mandy.ettinger@uhn.ca
 

Ottawa, ON

Oct 27th (Thur)
 

Sydney, NS

Sep 29th (Thur)
Oct 27th (Thur)

For more details about where, when, what time, and who to contact for any of these support groups, please visit PF Community>Support Meetings.
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