Newsletter

June, 2019


CPFF research funding totals more than $1 million

Dr. Charlene Fell, Chair, CPFF Medical Advisory Board

The Canadian Pulmonary Fibrosis Foundation’s research investment total tops $1 million with the funding of two, $90,000 research fellowships and two, $20,000 research grants for 2019-2020. CPFF funded its first research grant in 2010.

“This is quite a milestone in our relatively short history,” says Sharon Lee, Executive Director. “And, it’s all thanks to the dedication and hard work of our volunteers, the contributions of our donors and the ideas and interest in our research community.”

Research funding by CPFF for 2019-2020 is $220,000, the same as last year’s funding. Congratulations go to the successful applicants:

Dr. Alison Wong of St. Paul’s Hospital in Vancouver will receive a second year of $90,000 in funding as a two-year Robert Davidson Fellow. You can read about the progress of her research in the May 2019 newsletter.

Dr. Stacey Lok of Saskatchewan will pursue a one-year, $90,000 Robert Davidson Fellowship at the University of Calgary, involving research, patient care and education. Her primary research project will compare two treatment options for interstitial lung disease caused by severe schleroderma, an autoimmune condition. A future issue of Hope Breathes Here will profile Dr. Lok and her research.

Two research grants of $20,000 each will be announced later this spring.

CPFF’s Medical Advisory Board (MAB), established in 2017, examines grant requests received from the research community and determines the recipients. They perform this service for CPFF as volunteers. This group is comprised of eight of Canada’s most highly respected respirologists, pulmonary fibrosis specialists and researchers and helps ensure your donations for research are allocated wisely.

“The application and review process is rigorous,” says MAB Chair Dr. Charlene Fell, Director of the University of Calgary Interstitial Lung Disease Program, “conforming to standards at other research granting organizations.” MAB members are recused from reviewing applications from their own medical or academic institutions. You can read more about the research application process and eligibility criteria in the research section of our website.

The Robert Davidson Fellowship supports a one or two-year fellowship in pulmonary fibrosis in Canada with at least 75 per cent of time protected for research-related activities. The combination of clinical and research activities provides candidates with the opportunity for academic career development that will enable them to become key national and international members of the ILD community. Candidates will be expected to lead a research project at their training institution, with the goal of also participating in multicentre activities that will establish nationwide connections with other Canadian centres.

CPFF Research Grants are one-year grants of $20,000 each, which can be used to support clinical and/or translational research in interstitial lung disease. The proposed research project must have approval from the principle investigator’s institutional ethics review board. The principal investigator/applicant for a research grant must be either a physician, scientist or healthcare professional with an academic appointment and therefore eligible to apply for her/his own research grants as an independent investigator.


Hope Breathes Here

Welcome to your CPFF revamped newsletter titled Hope Breathes Here. The new name reflects themes from suggested names submitted by several members of our community. Hope was mentioned in many submissions and by sharing news about research and advocacy, as well as inspirational personal stories, we strive to bring you hope.

And, of course Breathes reflects the impact of pulmonary fibrosis. Here is the Canadian Pulmonary Fibrosis Foundation. Through our newsletter, website, support groups, educational initiatives for patients, caregivers and health professionals, CPFF is your source for credible information, news, community involvement and compassionate support.

Thank you to those who submitted suggestions for the newsletter’s new name and those who took a moment to vote on the name choices offered. Those who made suggestions will receive a CPFF t-shirt for their ideas.

Going forward, you will receive Hope Breathes Here by email on the first Wednesday of each month, except in July and January. Each new issue of the newsletter will also be posted on our website here and previous issues will also be available on the website here.

We encourage you to share your free newsletter with your family and health care professionals. Anyone can subscribe here. You can also follow us on Facebook at https://www.facebook.com/TheCPFF/.


This Group’s for you!

Bob Mellor of Chilliwack B.C. is still involved in the Vancouver Support Group, more than three years after his transplant

Within hours of being released from hospital – 17 days after lung transplant surgery – Bob Mellor was sharing his experiences with his fellow CPFF Support Group participants at St. Paul’s Hospital in Vancouver, B.C.

“I kept telling my doctor at Vancouver General, ‘I’ve got to get out of here by noon, so I can make it to our Group meeting at 1:30,’” explains Bob. “I knew we had a meeting that day, and I wanted to let everyone see that I was OK and tell them all about it. Luckily the two hospitals are not too far from one another and I made it.”

Mellor has been a very active member of the Support Group for more than five years, joining shortly after the Group was established. He received his lung transplant in November 2015 and continued to attend the meetings held every two months. He is the administrator of the Group’s Facebook page for BC residents, maintains the Group’s email distribution list of about 60 people and shares credible resources and information that come up at the meetings for those who cannot attend.

Led by Fran Schooley, a clinical coordinator at St. Paul’s Hospital, the two-hour meetings often involve a speaker or presentation, with time for discussion among the 30 or so participants.

In Niagara-on-the-Lake, Ontario, Jack Rapattoni has been leading the volunteer-based CPFF Support Group since January 2019. He took on the leadership task at the request of Terry Hardy, who started the group 15 months ago, along with Dan Meloche. Sadly, Terry passed away in December 2018. “He’s left a wonderful legacy establishing our very tight-knit Group,” says Jack.

Terry Hardy left a legacy by establishing the Niagara-on-the-Lake Support Group

Terry and Dan met at a rehab clinic at St. Catharines General Hospital and discussed the need for a local Support Group for people living with IPF and their caregivers. While Dan underwent a double-lung transplant, Terry forged ahead to start the Group. He found a meeting space at Niagara-on-the-Lake’s Community Centre, let people know about the Group and lined up expert speakers from community agencies, oxygen suppliers and local health care facilities.

The Group now has about 27 members and meets each month with some members also getting together for lunch at a local restaurant once a month. “We have the goal of making the most of every moment of each day,” says Jack, who has been living with IPF for nine years now. (He has a slowly progressing form of the disease.)

“The purpose of our group is mutual support. As people become more educated about IPF and the resources at their disposal, they are better able to cope,” says Jack. “Practical tips can help you overcome your fears and take part in more activities, improving your life and your outlook.”

Jack relates that one fellow had not been to his cottage in seven years, but with more knowledge about travelling logistics and less fear, he recently went to his cottage for four days.

Being better informed helps people living with IPF to communicate better with their health care team and discuss various treatment options. Knowledge helps you to advocate for yourself and for others. Support Group members often find that supporting others makes them feel more useful, more engaged in life and more confident.

Jack Rapattoni now leads the Niagara-on-the-Lake Support Group

Both Bob and Jack recognize the need for patients to advocate for the IPF community in Canada. Before his transplant, Bob, along with several other IPF folks from the support group, met with several MLAs in B.C. to advocate for provincial coverage for IPF medication. (B.C. was the last province to provide coverage of the drugs which slow the disease’s progression.) “There I was, on oxygen, and I’d meet an MLA, show them one of my pills and tell them: ‘I take nine of these each day and each one costs me $13.’ I think it had an impact.”

In Ontario, Jack is communicating with local oxygen companies to try to provide consistency in customer service and access, hoping to expand this into a provincial initiative with the help of the Canadian Pulmonary Fibrosis Foundation (CPFF.)

Both Groups have also been involved in fundraising as well. Bob’s daughter raised $10,000 in a campaign several years ago. And Terry partnered with Niagara-on-the-Lake’s jazz festival, which donated 50 per cent of its profits to the cause.

Asked about the challenges and rewards of their support groups, both men acknowledge that the reality that not all of their group members will survive is tough for everyone in the group. But, the rewards of learning from experts and one another and supporting one another to live their best life, now, is worth it and honours their friends who have passed away.

“When someone tells the group, ‘You people have changed my life,’ it feels great,” says Jack.

“It’s good to know you are not alone,” says Bob, “although everyone’s journey is different. You learn to accept one another and support each other without judgment.”

There are currently 15 CPFF Support Groups in different parts of the country. Consider going to a meeting near you and take your spouse or care partner with you. Not only will you learn a lot about IPF and your health care options, you’ll meet some wonderful people facing the same challenges as you. You will no longer be alone.

If you are interested in starting a Support Group in your area – or online – contact Sharon Lee, CPFF Executive Director at sharon@cpff.ca. A CPFF Support Group Toolkit is available on our website and provides lots of useful tools and tips. Funding for your group may be available from CPFF.


Tips for travelling with IPF

Ron and Maxine Flewett of the UK, keep a display of souvenirs from the 78 countries they have visited since Ron was diagnosed with IPF five years ago

As we head into summer, we’re happy to share with you some travel tips from Ron and Maxine Flewett, who live in the UK, but have travelled to more than 78 countries since Ron was diagnosed with IPF in 2014. We’ve edited and adapted the tips for our Canadian readers.

Ron is proof that you don’t need to be afraid to travel with IPF, if you are prepared. If you Google “Ron Flewett UK” you can find several videos and articles about, and by, Ron. Sharon Lee, CPFF’s Executive Director, met him and his wife earlier this spring at a European Idiopathic Pulmonary Fibrosis and Related Disorder Federation (EU-IPFF) conference.

CPFF has plenty of information about travelling with IPF on its website here.

Medications

  • Always take your medications in your carry-on if flying, in its original packaging. You don’t want them in your checked baggage, in case it is lost or delayed. Keeping it in its original packaging helps with security at border crossings.
  • Always take a supply of antibiotics.
  • Take extra medication in case of travel delays.
  • Check with an immunization clinic and/or your doctor to be sure you have the appropriate vaccines for your destination and that you can tolerate getting them if necessary. (CPFF has more information about IPF and vaccines here.)
  • Carry a small bottle of hand sanitizer and use it often to reduce infection.

Insurance

  • Always get travel insurance. You may need to inform your provider of the pre-existing condition of IPF, but ask what they consider a terminal illness, if they ask if your illness is terminal. IPF is life limiting, but not terminal. This may vary with insurance firms, but some consider terminal illness as one that your doctor has said you have less than a year to live.
  • Be sure to take your insurance coverage paperwork with you in your carry-on luggage when flying. Make sure you and your travelling companions have the emergency number your insurance company gives you.
  • Create three copies of a list of your emergency contacts, insurance information and your doctor’s name and phone number. One copy is for you, one for your travelling companion and one to leave with someone at home.
  • CPFF has more information about IPF and travel insurance here.

Planning

  • Research your accommodations, for instance if a hotel is at the top of hill, or has no elevators, you may want to consider an alternative.
  • Check on the weather conditions at your destination. It can affect your breathing and coughing. Try to avoid sudden changes in temperature, which can increase coughing.
  • Make sure the activities, or excursions, you plan are within your physical limits.

Air conditioning

  • If you are in an air conditioned room, putting a water-based nose lubricant (not Vaseline) at end of your nose at night can help stop your nose from blocking up and sore throats. Please note: If you are on oxygen, do not use a lubricant on your nose.
  • Wet a towel and leave in the room during night. This will help retain humidity in the room.
  • If you are going out for the evening, turn the air conditioning down low, to help retain moisture in the room until you return.

Other

  • At hotels and resorts, eat in the main restaurants and not at the buffet. There is less chance of picking up infections.
  • Avoid touching “germ magnets” such as hand rails on stairs and doorknobs. Use elevators or escalators whenever possible. This also helps conserve your energy for other activities.
  • Always wash fruit.

Mark your calendar for these upcoming events

Clarke Family Walk for Pulmonary Fibrosis

Join the Clarke family on Sunday September 15, 2019, in Calgary, Alberta for the Clarke Family Walk for Pulmonary Fibrosis in support of the Canadian Pulmonary Fibrosis Foundation.

The Clarke family has several members living with PF. Help them raise awareness and funds to continue the work of the CPFF for a better future. For more information and to register, click here.

 Scotiabank Charity Challenge

  1. Halifax – June 6th to 9th, 2019. Click here for more information and to register.
  2. Toronto – October 20th, 2019. Click here for more information and to register.

We need volunteers to help solicit walkers and runners for the above events that are willing to collect pledges. Our goal is to raise $15,000 at each event. Please contact Executive Director, Sharon Lee at sharon@cpff.ca, if you’re able to help out.

Blow Bubbles for Pulmonary Fibrosis Month

 September is Pulmonary Fibrosis Month, when we band together to increase awareness of PF in communities across the country. The Blow Bubbles for Pulmonary Fibrosis campaign is one way you can get involved in a fun and easy way.

If you are gathering with friends and family this summer, have them blow bubbles with you and post (pictures and/or videos) onto our Facebook page in September. Use with the hashtag #CPFFBubbles.

Share your story of who you are blowing bubbles for, by sending your story and pictures to admin@cpff.ca.

Contact media in your community asking them to broadcast, write about and take pictures of you and your group blowing bubbles and raising awareness of pulmonary fibrosis.

Light up your community landmarks for Pulmonary Fibrosis Month

Toronto’s CN tower is red for Pulmonary Fibrosis Month in September

Time is running out to ask your community to light up a landmark in your community – clock tower, town hall, sports facility, etc. – during September for Pulmonary Fibrosis Month. If you need assistance to make such a request, contact CPFF Executive Director Sharon Lee at sharon@cpff.ca.


CPFF recognized for research funding

On behalf of CPFF, Executive Director Sharon Lee receives an Upper Canada Medal from researchers Dr. Lee Fidler, left, and Dr. Shane Shapera

Earlier this spring, CPFF received an Upper Canada Medal from the Toronto General & Western Hospital Foundation in recognition of our contributions to research. To date, CPFF has granted the foundation more than $430,000 for a number of IPF research initiatives.

You can read the results of one of these CPFF-funded research projects in the May 2019 newsletter here.