A Message from the Chief Executive Director
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Happy Summer!
I hope you all have the opportunity to step back from your busy schedules to relax and enjoy some time with family and friends. It certainly has been a busy spring, as always, for Cystic Fibrosis Canada. We cannot begin to thank you enough for all of your efforts with the Walk to Make Cystic Fibrosis History, as well as the multitude of other events and activities that have taken place so far this year.
As Cystic Fibrosis Canada employees, one of the things we value most about working for this amazing organization is the opportunity we’re given to get to know and work with those living with CF and their families. I am sometimes asked if I have a “personal CF connection”. My response is always that while I did not have one before working here, I am now proud to be part of this incredible and passionate community, and have many personal connections. I think I can speak for all of the staff team when I say that we appreciate your willingness to embrace us as part of the community, and we recognize that our organization would not be what it is without the tremendous involvement of the CF community. There is no time of the year that this becomes more evident than the whirlwind of April, May and June, where many of our most important and fruitful events occur.
Thank you, as always, for your generous support as volunteers, advocates and donors! You are making a huge difference as we work together towards our goal of
a world without CF.
Best regards,
Jeff Beach
Chief Executive Director – Ontario
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Every year, we mark Cystic Fibrosis Awareness Month across the province through a variety of fundraising, advocacy, and awareness activities. May 2019 was no different. We kicked off the month with the 17
th Broken Arrow Conference, and wrapped it up with an amazingly successful 15
th Annual Walk to Make Cystic Fibrosis History. We’d like to extend a huge THANK YOU to all of our amazing volunteers, donors, clinicians, researchers, fundraisers, team captains, delegates, and community members for all their hard work year-round.
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2019 Broken Arrow Conference
Cystic Fibrosis Canada’s 17
th Broken Arrow Conference was hosted in Toronto from May 2
nd to 4
th to help kick off this year’s Awareness Month. The event brought together a number of major players in the CF community from across the country, including physicians, nurses, researchers, scientists, pharmaceutical industry representatives, CF Canada Board members, CF community members, and individuals living with CF. This year’s theme surrounded
Patient Engagement,
with the panels and discussions being kicked off by
Jeremie Saunders and Brian Stever of Sickboy Podcast. To learn more about the Broken Arrow Conference and to explore some of the discussions, please
click here.
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Decant Gala & Fine Wine Auction – An Evening in Argentina
Toronto was also the site of the 5
th Annual Decant Gala & Fine Wine Auction on Saturday, May 4
th. This year’s event highlighted some of the diverse and exciting tastes of Argentina, while also featuring fantastic performances from Payadora Tango Ensemble and Tango de Oro dancers Fabian & Roxana Belmonte. Those in attendance had the opportunity to enjoy an authentic Argentine meal and an assortment of sommelier paired wines from the prosperous vineyards throughout the South American country. Cystic Fibrosis Canada Ambassador Ben Mulroney returned as the event’s Master of Ceremonies, and keynote speaker Lindsay Bishop shared her CF journey with the audience of over 350 guests, corporate sponsors, and volunteers. The evening brought in
over $430,000 for cystic fibrosis research and care, increasing the event’s grand total to $1.8 million raised since 2015.
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National Shinerama Conference
Over the May long weekend, 36 delegates from 23 colleges and universities across Canada gathered at McMaster University for the annual Shinerama National Leadership Conference. Over the weekend, Shinerama leaders learned about cystic fibrosis and how to successfully run a Shinerama campaign. Shinerama leaders got the chance to listen to many different guest speakers, including Tara Bourque, CF Champion and Shinerama alumna, and also sit in different workshops related to running a campaign. Overall, it was an extremely successful weekend with students leaving feeling motivated and ready to begin their campaigns.
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Advocacy at Queen’s Park
More than 20 members of the Cystic Fibrosis Canada National Advocacy Program from across Ontario gathered at Queen’s Park from May 13
th to 16
th to advocate for improved access to medications and quality of care for those living with CF. The Cystic Fibrosis Canada advocacy volunteers and staff met with 43 elected officials over the four days, were introduced in Question Period on May 15
th, and hosted a legislative reception on May 16
th where a number of Members of Provincial Parliament and their staff were in attendance.
The Ontario Advocacy Team had the opportunity to meet with Premier Doug Ford, Minister of Health and Long-Term Care Christine Elliott, a number of Cabinet members, as well as the Health Critic and other members of the opposition. The meetings were very well received, including those with Premier Ford and the Minister of Health. The team will continue to advocate for equitable access to drugs and treatments for cystic fibrosis patients, and continue to communicate the need for the development and implementation of a pan-Canadian rare disease strategy.
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The Walk to Make Cystic Fibrosis History
Communities across Ontario came together on Sunday, May 26
th to celebrate the 15
th Annual Walk to Make Cystic Fibrosis History. The province was host to 29 different Walk locations, as well as a Virtual Walk, and
raised over $1.5 million for cystic fibrosis healthcare initiatives.
Cystic Fibrosis Canada also introduced the first ever International Walks to Machu Picchu, China, and Iceland to mark the 15
th Anniversary. Over 70 participants registered to take part in these Walks, and to date they've raised an additional $400,000 for the cause.
We’d like to extend our sincere thanks to all of the amazingly dedicated and hardworking team captains, walkers, volunteers, fundraisers, and walk coordinators. Without your tremendous efforts, the Walk to Make Cystic Fibrosis History would not be the success it is year after year. Thank you!
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CF Stories - Brenda Chambers-Ivey
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Born into Advocacy
Although I have been involved in promoting cystic fibrosis since I was 5 years old, it was in my early 20’s that I became very actively involved in CF awareness and advocacy. The training ground for my current roles of Ontario Regional Advocate, and member of the Adult Cystic Fibrosis Advisory Committee, reflects back to the early 1980’s when I lived in Winnipeg, MB and became involved in the newly formed Manitoba CF Adult Group. There were only four other members at that time and although they have all since passed on, I will never forget their names as they were my first cystic fibrosis peers and role models…Susan Zeyha, Chris Johnson, Wallace Hamm and Pasquale Pallone. They taught me so much and opened my eyes as to what Cystic Fibrosis was outside of my own little world (I grew up in a town where me and my cousin were the only ones with CF). They were also the first friends that I lost to cystic fibrosis.
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From my involvement with this group, and the Winnipeg Cystic Fibrosis Chapter, I had the opportunity to represent Manitoba at the very first Adult Cystic Fibrosis Biannual Conference in Bolton, ON (around 1982). We were a group of idealistic and driven young adults from across Canada that were inspired to do better, be better, advocate for and help others with CF. We had so much passion and determination to make the world a better place for Canadians living with CF. I remember being so excited and in awe of these other CF adults. Of that first group there were a few individuals that really stood out as agents of change and as with the Manitoba CF Adult Group, they were my mentors and I aspired to be like them. Sue McKellar, Brian Everson, Janice (Big Red) Boston, Frank Smith, Paulette Boston and Wally Speckert are a few of the names that I remember. Being able to participate in four consecutive conferences with these amazing people changed my view about having CF. It made me realize that I was a part of a distinct group of individuals who faced having Cystic Fibrosis with strength, confidence, tenacity, knowledge and humour.
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Above: Kananaskis CF Adult Conference, 1992
Below (left): Vancouver CF Adult Conference, 1996
Below (right): Kananaskis CF Adult Conference, 1992
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Of course, this was back in the days before the Cystic Fibrosis Infection and Control Policy when persons with CF could gather together in the same space. This policy was implemented because of evidence of cross-contamination between persons with CF and an “outbreak”, if you will, of cepacia. This created a sense of isolation for many of us that were able to attend these, and other events, with other CF persons. Today social media allows us to “meet” for work and socialization…BUT, it will never be the same as being in the same space and feeling the energy created by an enthusiastic and committed group of individuals.
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After many years of involvement with Cystic Fibrosis Canada my health started to decline to the point that I was listed for a double lung transplant in August of 2000. I received the transplant on July 28, 2003. About a year after the transplant I stepped back from all things CF for about 10 years. This was time to “catch up” and “refocus” on other things in life. As of three years ago I am back at it, with a vengeance! I am constantly in awe of, and inspired by, those who advocate for the CF community. Parents, family members, medical personnel, corporate sponsors and the amazing staff at Cystic Fibrosis Canada. Today’s generation of advocates are strong, outspoken, educated and fighting for things such as better treatments, access to new genetic modifying drugs, and National pharmacare. Again, I am inspired to do better; be better!
Being 16 years post-transplant and doing exceedingly well, I count my blessings each day. Life post-transplant has had its challenges, but I often wonder why I have done so well when others have not. I truly believe that advocating for others with CF is what keeps me going. And of course, my wonderful husband of 22 years without whom this journey would certainly have not been nearly as interesting!
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By the way, having CF does have its perks. Like meeting our Celebrity Patrons Mila Mulroney (above), Celine Dion (below left) and her husband Rene Angelil (below right).
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Vibrant Volunteers - Farwell4Hire
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For over a decade, radio personality Mike Farwell has been helping to raise vital funds and CF awareness throughout Kitchener-Waterloo and the surrounding area. After losing two sisters to the disease in the early 1990s, Mike knew he wanted to make a difference in the lives of those living with cystic fibrosis and their families. He’s since become involved as a volunteer with Cystic Fibrosis Canada’s Kitchener-Waterloo Chapter, and has used his reach as host of The Mike Farwell Show and the voice of the Kitchener Rangers OHL team to unite the community in the search for a cure.
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In May 2014, he celebrated Cystic Fibrosis Awareness Month by holding his Farwell4Hire campaign to fundraise for the Walk to Make Cystic Fibrosis History. After an immensely successful inaugural year, Farwell4Hire has made its return every May since. Mike will complete as many odd jobs and tasks as he can schedule, with all payments, tips and commissions going straight to CF research and care initiatives. Whether it be washing cars, painting houses, landscaping, cooking up a storm or anything else his imaginative supporters come up with, Mike’s done it all! Over the past six years, he’s raised over $400,000 through the campaign, with no signs of interest or support slowing down.
We want to take this opportunity to thank Mike, his team, and all of his amazing supporters for helping us get one step closer to a world without CF! If you want to learn more about Mike’s initiative and all the jobs he’s completed, visit:
https://www.facebook.com/farwell4hire/.
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Staff Spotlight - Tori Hopper
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This month, we spoke with the amazing Tori Hopper, who's based out of our Windsor office, to ask about her experience with Cystic Fibrosis Canada and what she thinks about the amazing work being done within the CF community.
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What’s your position?
Coordinator – Fund Development for Southwestern, ON
How long have you been with the organization?
2 years this October :)
What made you first join Cystic Fibrosis Canada?
I was a recent graduate (by a week or two) looking to start my career in the not-for-profit sector but did not know where to start. I started researching local organizations within my region and CF Canada popped up. I had heard of CF before, but was no expert.
I started digging a little, learning about how locally CF Canada gives back to their community and how they truly invest in those living with CF in the region and BAM – I was hooked. I couldn’t believe how dedicated CF families were to the organization and vice versa; it isn’t common that volunteers and families are treated with so much respect and that really hit home with me.
Since then my initial beliefs have been verified numerous times and I am very thankful I could began my journey with CF Canada.
What’s your favourite part about working here?
My CF families. I chuckle every time I say “my” CF families; however, the families within my regions are so involved and passionate about the cause and the organization that they have truly accepted me as part of their CF community.
They keep me grounded and remind me why I am here and why we fight so hard for CF awareness and funding. I couldn’t ever thank them enough for all that they do, but I hope they know how much they are appreciated and admired.
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What has been the most exciting or special moment during your time with the organization?
Watching a young woman with CF break out and start sharing her story. It was an extremely quick process; we met briefly, chatted about our organization and immediately she said she wanted to be involved with the Chapter Board of Directors.
We had a CF Liaison position open, and I pre-warned her she would be called upon to be a guest speaker, advocate for the cause and possibly do a few radio and/or TV interviews and she was all for it!
This woman had never been involved before but because she felt, health wise, that she was stable and ready we welcomed her with open arms.
She has now been involved with the Windsor-Essex Chapter almost a year and this young woman has made the perfect connection between CF and our organization. She is a go-getter and a true inspiration – I am so lucky to have met her and had to opportunity to welcome her onto our Chapter Board and into our Chapter family.
What would ending CF mean to you?
It would mean that the families that I have had the opportunity to know so well wouldn’t have to suffer, physically and financially any longer. I would be happy to be out of a job if it meant they could live a “normal” life.
Tori, thank you for sharing your thoughts with us and for all the amazing things you do for Cystic Fibrosis Canada!
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The Kinsmen Club of Kirkland Lake have recently completed their 46th Annual Kinsmen CF Radio Day, raising $24,065 for Cystic Fibrosis Canada. Every April, the Kinsmen and Friends take over the airwaves of 101.5 CJKL FM from 7am to 5pm, reading ads from local merchants, playing live music, having a laugh and raising awareness for Cystic Fibrosis. The Kinsmen are fortunate to have such a supportive and generous community who continuously come together to make this wonderful event a success year after year.
Cystic Fibrosis Canada is extremely proud and grateful to have the support of the Kinsmen Club of Kirkland Lake, and the entire association of Kin Canada! Over the past 55 years, Kin has raised or donated nearly $50M for Cystic Fibrosis Canada, which has advanced the breakthroughs in research, healthcare and advocacy that have led to the progress and hope that we have today for people living with CF.
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Fantastic Fundraising - Lawn Summer Nights
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Get out on the greens this summer with Lawn Summer Nights (LSN)! Since it's inception in 2009, LSN has raised $3.4 million for cystic fibrosis research and care. With over 18 locations across Canada and more than 5,000 participants, it's grown to be one of the most exciting and widespread fundraising events supporting Cystic Fibrosis Canada. Whether you're on a team, looking to buy a social ticket, or you want to support a participant, be sure to check out the 7 locations across Ontario!
Classic Events
London: July 4, 11, 18, and 25
Toronto: July 4, 11, 18, and 25
Ottawa: July 3, 10, 17, and 24
Pop-Ups
Windsor: August 23
Chatham: July 26
Brantford: July 20
Simcoe: July 26
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Mad for Maddie Street Party
Fashioning a Cure 2019: A Night at the Oscars
Music in the Fields
Ride for the Breath of Life
7th Annual Lucky Lucy's Casino Night
4th Annual Tillie Sheppard Memorial Golf Tournament
5th Annual KISS CF Goodbye
These are only a few of the exciting activities happening over the next few months - be sure to follow your local chapter on Facebook to keep up to date on all the events happening near you!
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Looking to get more involved with Cystic Fibrosis Canada?
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Is there a chapter, volunteer, event or initiative that you would like to see featured in a future newsletter?
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Cystic Fibrosis Canada - Ontario | 1-800-378-2233 | ontario@cysticfibrosis.ca | www.cysticfibrosis.ca
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