Volume 5 | September 30, 2019
Ontario Newsletter
Monday, September 30, 2019
A Message from the Chief Executive Director
On Monday, October 21 st , 2019 Canadians will decide who will lead our nation for the next five years. This is, of course, an important decision that will chart the course on many issues including the economy, the environment, and of course health care to name a few. Cystic Fibrosis Canada’s team of advocacy volunteers and staff are calling on political leaders of all parties to hear our message and commit to ensuring that Canadians with cystic fibrosis and other rare diseases have access to life-changing and life-saving medicines. Your voice needs to be heard along with our collective message: if you haven’t yet, please sign the petition and let those who are standing for election know that this is a crucial issue that needs attention and action towards solutions.
 
This fall is also a busy time for Cystic Fibrosis Canada Chapters across Ontario with many events and activities being planned. Thank you to all our amazing volunteers who make things happen in the community, including of course, our partners at Kin Canada. I had the privilege of attending the Kin Canada National Convention in August, and I am continuously amazed at the impact that Kin has, not only in helping advance the cystic fibrosis cause, but also in supporting countless other charitable causes and community initiatives across the country!
 
Thank you again to all our donors and volunteers for your incredible support.

Best regards,

Jeff Beach
Chief Executive Director – Ontario 
Healthcare Hub - Adult Cystic Fibrosis Advisory Committee
The Adult Cystic Fibrosis Advisory Committee (ACFAC) is a standing committee of Cystic Fibrosis Canada that aims to provide perspective and advice on CF-related issues, as well as advocate for public policies and programs to help people with cystic fibrosis.

Members include adults with CF across the country and two healthcare professional advisors that help foster and support an engaged and knowledgeable CF community. Currently, the ACFAC is working to develop new resources for three areas of focus:

  1. Fertility and sexuality – The committee is hosting an educational webinar series on fertility and family planning. This 2019-2020 series consists of presentations and discussions from health professionals and patient speakers on key topics relevant to fertility and CF. You can learn more about the upcoming webinars, view any previous webinars, or register for the series, click here.
  2. Transition of care– As a pilot project, the committee is developing guides for some adult clinics for people with CF that are transitioning from pediatric to adult care. This guide is intended to help people with CF that are transitioning from paediatric to adult care be more comfortable and confident navigating the management of their own CF. The committee’s goal is to develop guides for all adult clinics in Canada post pilot project.
  3. Parenting with CF – The committee is also developing a guide for parents that have CF. This resource is intended to help adults with CF that are parents develop effective ways to manage their CF care and parenting.

The ACFAC has lots on the go! Questions about the work that the committee is doing can be directed to Eunice Mamic, Coordinator, Community Relations and Resources at advocacy@cysticfibrosis.ca.
Meet Meaghan Addante, ACFAC member from Ontario

 “I got involved with the ACFAC Spring 2014 at a point in my life when CF had begun affecting my ability to live normally. I was looking for a place to contribute, where I felt like I wasn’t alone, and to connect with others with CF going through similar problems. CF is a lonely disease, and in this group, I found a place to belong and together we have formed a great team.
"The ACFAC brings hope and ideas for change within the CF community. Our group is built of people across Canada living with CF as well as medical professionals who work with CF daily. Together, we brainstorm on what we can do to help others living with CF to make their journey a little bit less rocky than ours may have been. We have had a busy year in 2019 and there are many exciting things in the works. Things like transitioning from pediatric to adult care and fertility webinars are two of our biggest focusses. Having the chance to work on topics like these are uncharted because until this point, CF patients rarely made it to the age of moving from pediatric to adult care, let alone being open to the possibility of having their own children. The future of CF looks brighter every day and I consider myself very lucky to be able to be part of this new age.” 

-Meaghan Addante
Vibrant Volunteers - Steve Fantham
This month we spoke to the recipient of our 2019 Regional Volunteer Leadership Award - Steve Fantham. Steve has not only been a dedicated volunteer for years, but he has also encouraged colleagues, friends and family members to also get involved and support the cause.
In what capacity do you volunteer?

I am involved with a Cystic Fibrosis Canada fundraising event called Lawn Summer Nights (LSN). LSN is a lawn-bowling fundraiser targeted towards getting young professionals involved in philanthropy. With 18 events across Canada, we have raised around $4 million since the event started in 2009. I am the City Lead for the LSN Toronto event and recently joined the Board of LSN earlier this year, which will be my primary focus going forward.
How long have you been volunteering with Cystic Fibrosis Canada and what made you first get involved with Cystic Fibrosis Canada?

My volunteer experience with Cystic Fibrosis Canada started in 2014. After graduating from Wilfrid Laurier University, I started my accounting career with KPMG. KPMG supports its employees to get involved in their local communities. My older brother, Ryan, who also worked with KPMG, encouraged me to get involved with an event he was organizing at the time called Lawn Summer Nights. With some apprehension, as I’d never lawn bowled before and not knowing how the event was going to cater to our generation, I got involved. In the beginning, my volunteer capacity was fairly limited but after the first year, I was hooked! I continued my involvement until I moved to Toronto after the event was finished in 2015. Moving to a new city, I knew I wanted to stay involved with LSN. I raised my hand to get involved in starting up a second event in Toronto and took over as the Event Lead for the new event. In the subsequent years, I would see my role transition from Event Lead to City Lead then to joining the Board earlier this year.
What’s your favourite part about being a volunteer?

The people. Throughout my involvement with LSN, I’ve met so many unbelievable and inspirational people – from my fellow volunteers to the doctors and nurses that interact with this disease every day and the family members of those that suffer from CF. No group of people has a larger impact on me than those who suffer from the disease. Their stories of resilience are inspirational. I would be remiss if I didn’t also mention the great people at Cystic Fibrosis Canada who partner with their volunteers in such an enjoyable way that encourages increased involvement with the organization.

What has been the most exciting or special moment during your time with the organization?

There have been many special moments during my time with the organization. If I had to limit it to just one, I would highlight a fundraising campaign LSN ran in 2018. We asked if KPMG would support a special campaign to celebrate our 10 th year since our first event, and we created the 10x10x10 campaign which involved KPMG matching up to $10,000 raised during a 10-hour time period on July 10 th. The response and engagement we received from the LSN community were unbelievable. $10,000 in donations were received in under two hours! More amazing than that was that the donations kept coming. During the ten hours, we received $40,000 in donations. With the $10,000 match from KPMG, the 10x10x10 campaign generated approximately $50,000 in ten hours. I find it truly inspiring to see the impact that a group of people can have when they rally behind a cause.
What would finding a cure or control for CF mean to you?

We have seen incredible strides in the life expectancy for CF patients, even since I first became involved. For me, a cure for CF would mean patients are able to live up to their full potential and that our hard work to raise funds and awareness has paid off. I am very proud to be involved with LSN and CF Canada, and will continue to work hard to make CF stand for Cure Found! 

Steve, thank you for all of your amazing work over the years and for your continued contributions to the immense success of LSN, both within Ontario and across the country! You are a true example of volunteer leadership, congratulations!
Staff Spotlight - Johanna Cotte
This month, we spoke with Johanna Cotte, who works tirelessly across three of our Sourthern Ontario chapters, supporting numerous events, activities and initiatives in each.
What’s your position?

Associate, Fund Development for the Hamilton, Niagara and Halton-Peel Chapters

How long have you been with the organization?

2.5 years

What made you first join Cystic Fibrosis Canada?

Looking to return to the non-profit sector and help a great cause.

What’s your favourite part about working here?

The volunteers - working with them, laughing, crying and sharing in their commitment to END CF, it is truly an honour.
What has been the most exciting or special moment during your time with the organization?

Anytime I hear someone living with CF or their family member share their story. I am always touched and moved by what they say, it inspires me and I feel privileged to be part of the CF “family”.

What would ending CF mean to you?

PURE JOY knowing how life changing it would be for those living with CF and their families. 

Johanna, thank you for all your work and dedication over the years, and for always keeping a smile on your face. We're so lucky to have you!
Kin Krowd - National Convention
Kin Canada held its annual National Convention in Nanaimo, BC August 21-25, 2019.
 
The National Convention brings together the Kin National Board of Directors, District Governors and their teams, District Service Directors, Kin HQ staff members and representatives from Kin clubs across Canada for education, business sessions and fellowship. More than 300 people attended, enjoying the hospitality of the host community. 
Some highlights of the convention include:
  • The appointment of Brian Cooper at the National President’s Gala hosted by Outgoing National President Erin Thompson
  • The election of the new National Vice-President Terri Iredale
  • The appointment of Vicki Andrews as National Service Director and Dustyn Pumphrey as the Kin-CF Liaison Chair
  • A fun fundraising event for Cystic Fibrosis Canada – the Weird Science CF Lab – where participants were locked in the “lab” until they raised a certain amount of donations for CF Canada ($63,000 was raised)
  • Education sessions on the difference between a learning mindset and a judging mindset, and the power of possibility thinking
The service agenda is a big part of the Kin Convention, and Cystic Fibrosis Canada is provided with many opportunities to highlight and further our national partnership. Jeff Beach attended the National Convention on behalf of Cystic Fibrosis Canada, and was joined by Sara Hoshooley, the Regional Executive Director from BC, and Leona Pinsky, Vice-Chair of the CF Canada National Board, who was a fantastic keynote speaker at the Service Gala held during the convention. Leona shared her story as the mother of a young adult living with CF and how the Kin partnership has impacted her family and all Canadians living with this disease. The Bill Skelly Award winners were also presented at the Service Gala, along with the Ian F. McClure Award Winner for 2019, Ontario’s own Bill Roskar from District 1. 
 
It was announced at the Service Gala by outgoing Kin-CF Liaison Chair Tammie Corbett that the total for Kin Canada contributions and fundraising for CF Canada for 2018-19 exceeded $1.2M, bringing the cumulative total over the 55 years of this partnership to more than $47M! Cystic Fibrosis Canada is forever indebted to Kin Canada and the Kinsmen and Kinettes from across the country for their unwavering support. “Partners for Life” is not just a slogan for us – we are indeed one family working towards our shared vision of a world without CF!
2020 Walk to Make Cystic Fibrosis History
On  Sunday, May 31, 2020 , thousands of participants across Canada will unite at local community walk sites during Cystic Fibrosis Awareness Month to celebrate their fundraising efforts, while imagining a world without CF. Over 10,000 supporters, including volunteers, donors, partners and participants help support Cystic Fibrosis Canada’s mission: to END CF. The funds raised at the walk are used to target world-class research and supporting and advocating for high-quality individualized CF care.

In Ontario, we're so pleased to host 25 different Walks, as well as an Ontario Virtual Walk which can be done anywhere. To find a Walk location, register, support a Walker or Walk team, or for more information, please visit: https://www.cysticfibrosis.ca/walk/2020/.
2020 International Worldwide Trek

After the immense success of the 2019 International Worldwide Trek, we're delighted to host another international adventure in 2020! After an overwhelming interest in the location from Walkers and Walk participants, next year's adventurous group will be heading to ICELAND! For more information, including dates and pricing, be sure to check out our Worldwide Trek brochure.
Upcoming Events
Fusion Gala: Oktoberfest
Markham: October 19, 2019 - www.fusiongala.ca

Scotiabank Toronto Waterfront Marathon

Be sure to follow your local chapter on Facebook to keep up to date on all the events happening near you!
Looking to get more involved with Cystic Fibrosis Canada?
Is there a chapter, volunteer, event or initiative that you would like to see featured in a future newsletter?
Please contact Bryn Turner at bturner@cysticfibrosis.ca.
Cystic Fibrosis Canada - Ontario | 1-800-378-2233 | ontario@cysticfibrosis.ca | www.cysticfibrosis.ca