Volume 1 | September 25, 2018
Ontario Newsletter
Tuesday, September 25, 2018
A Message from the Chief Executive Director
As we kick of a busy fall season for Cystic Fibrosis Canada, the Ontario staff team and I are very pleased to share this first edition of our new newsletter with you!
This newsletter will be published quarterly and will provide information and updates for our volunteers and supporters in the various Chapters across Ontario. We will use this vehicle to celebrate successes, highlight the efforts of our amazing volunteers and staff, and share ideas and information that will draw us closer together as a team.

I am often asked by colleagues with other organizations in the charitable sector how Cystic Fibrosis Canada has been able to achieve such great successes and steadily “punched above our weight” when it comes to funds raised and advocacy successes relative to the rarity of CF. My answer is always the same: THE CF COMMUNITY IS SECOND TO NONE! We are a strong, vibrant, resilient and caring community, staff and volunteers working together, relentless in our focus on our mission to END CF.

Thank you all for your tremendous efforts and all that you do to represent the cause in your community!

Jeff Beach
Chief Executive Director – Ontario
Fundraising Fun - KISS CF Goodbye
After his daughter Tori was diagnosed with CF as an infant, Paul Taskas knew he wanted to do whatever he could to help raise awareness and funds for CF research and care. As a member of Canada’s KISS tribute band, Rock and Roll Over, Paul knew he could use his musical talent to create a fun and unique fundraiser in celebration of Tori and her fight against the disease.

In 2015, Paul and his bandmates held the first KISS CF Goodbye Benefit Concert in downtown Toronto. Now entering its fourth year, KISS CF Goodbye has grown to be a huge hit throughout the CF community, music community and beyond. This year’s event will be held on Saturday, September 29 th at “ The Opera House”, and will feature headliner Rock and Roll Over alongside Los Angeles-based Bon Jovi tribute band WANTED and Foreigner tribute band Jukebox Heroes.

Following in her father’s footsteps, Tori is also passionate about singing and playing music, and will be making a special appearance at the fundraiser. We want to thank Paul, Tori, and everyone involved in KISS CF Goodbye for all their amazing work over the past four years, and for encouraging so many others to link their passions with fundraising to support a great cause. And thank you for helping us work towards our goal to KISS CF Goodbye for good!

For more details about the event, or to purchase tickets, please visit: www.kisscfgoodbye.com
Chapter Connections - North Bay Chapter
There are 18 chapters across the Ontario region, with each being as unique as the communities they encompass. Regardless of size and location, every chapter plays an important role in Cystic Fibrosis Canada’s efforts to raise both awareness and funds across the regions.

Creativity and engagement are two of the most important factors that lead to fundraising success, and they are two areas where the North Bay chapter truly excels. While the community boasts a population of just over 50,000, CF has become one of the most promoted causes amongst young and old alike. The Walk to Make Cystic Fibrosis History has continued to grow in numbers year after year, with fundraising initiatives increasing every spring as well. An amazing team of volunteers whip up hundreds of tasty treats to sell for Cupcakes for CF, while Ivan’s Restaurant offers Cones for a Cure to help support the cause. Ivan’s also invites chapter volunteers to set up a station with information about CF and sell the ever popular #ENDCF caps the chapter had created. Local business owners and media outlets are always happy to spread the word and support the cause, whether it be through a financial contribution or by running a Zumba dance-a-thon.

The excitement doesn’t end in May though! Every September, first year students and volunteers from Nipissing University take to the streets, halls and grocery stores to support Shinerama. Shiners wash cars, help carry groceries for shoppers, shine shoes, flip burgers and do whatever they can throughout the community to help raise funds and awareness for Cystic Fibrosis Canada. On Shine Day this year, North Bay chapter volunteers helped coordinate a pancake breakfast for Shiners to help show their appreciation!

North Bay has proven to be a remarkable community with some of the most innovative and dedicated volunteers around. The initiatives and support from volunteers and community member is truly amazing, and proves that no matter the size of the community or the amount of money raised, every chapter has the potential to help us END CF! 
Vibrant Volunteers - Shinerama
Back to school can signify a lot of things, but for thousands of students across Ontario it means one thing: SHINERAMA! As Canada’s largest post-secondary fundraiser in support of Cystic Fibrosis Canada, Shinerama unites over 35,000 student volunteers from 45 universities and colleges across the country. Students come together every year to shine shoes, flip burgers, wash cars and do whatever it takes to make a crucial difference in the lives of those battling CF.

We want to extend our heartfelt thanks and appreciation for all of the student and volunteers who have been working tirelessly to make this year another successful one for all of the schools across the province and beyond! Thank you for braving the early mornings, the stifling heat and the unexpected downpours to help raise critical funds for CF research and care, you are truly making a tremendous impact on the CF community as a whole! 

To learn more about Shinerama, get involved, or donate to your local school's initiative, be sure to visit: www.shinerama.ca
Staff Spotlight - Sue House
On August 4th, 2018, Cystic Fibrosis Canada's very own Sue House celebrated her 15th anniversary with the organization! Based out of the Kitchener-Waterloo office, Sue has become the friendly face of CF Canada in the Kitchener-Waterloo and Huron Oxford Perth (HOPE) chapters, and has been a driving force behind a great deal of the fundraising success. Whether it's helping with the walk or Princess Ball preparations, assisting with Shinerama activities, coordinating volunteers, securing donations or sponsorships, or attending one of the many community events in her area, Sue is always ready to lend a hand and help work towards our goal to END CF. She's a familiar face to many in her chapters and beyond, and words cannot express the valuable contributions she has made over the years. Thank you, Sue, for everything you have done for the Ontario region, we're so lucky to have you!
What’s your position in the organization? 

Chapter Coordinator for HOPE and Kitchener-Waterloo and District Chapters.

How long have you been with the organization? 

I have completed 15 years working with Cystic Fibrosis Canada and excited to start on number 16.

What made you first join Cystic Fibrosis Canada?  

Prior to being employed by CF Canada I was a member of KIN Canada and spent my spare time helping families with cystic fibrosis. When the chapter was hiring it seemed like a perfect job for me.

What’s your favourite part about working with the organization?  

There are so many amazing days working in the not for profit and every event brings lasting memories but my favorite part by far has to be the friendships made with the volunteers and families’.

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

As I said already every event brings great memories but I would have to say the most exciting or special is to see a volunteer grown, marry, have children and see their children at events they support. Seeing someone with CF have a child of their own is one of my most memorable moments by far.

What would ending CF mean to you? 

Ending CF to me would mean retirement….and I would welcome that with open arms. It has been my dream to be put out of work because of a cure, since the day I started.  I believe it will happen before I reach my real retirement age.
Community Central - Windsor-Essex
The CF community has proven time and time again to be a force to be reckoned with. We’re constantly blown away by the hard working and dedicated members across the province who tirelessly do everything they can to collectively work towards our goal to END CF. This month, we wanted to highlight some of the fantastic events and activities that take place in the Windsor community.
Princess Ball:
As the leading event for Cystic Fibrosis Canada in the Windsor-Essex region, the Princess Ball brings young and old alike out for a royal afternoon at the Ciociaro Club. A highlight for many in the Windsor community, the Ball includes a lunch, activities, crafts, hair and make-up stations, dancing, a raffle and silent auction, and many other magical activities. Over 700 princes and princesses have been hosted annually, and more than 100 volunteers come out to lend a hand. After raising over $72,000 in 2018, the Princess Ball committee is aiming to bring in $75,000 for the 6 th annual event in 2019.
Sail for CF: 
There’s certainly no shortage of creativity in the Windsor area, and how better to demonstrate that than with Sail for CF? The 9 th annual Regatta was held on June 9 th, 2018, and – despite the rain – it was a huge success! Sailors and spectators from across the region came out to show off their boating skills, enjoy the delicious BBQ dinner, and try their luck at winning one of many prizes. With over $5,300 raised, Sail for CF proves that fundraising comes in all shapes and sizes!
Poor Boy Luncheon:
Advocis has a long standing partnership with Cystic Fibrosis Canada, coordinating and supporting a number of events across the country. On June 1 st, 2018, the 42 nd Annual Advocis Windsor Poor Boy Luncheon saw an amazing turnout of hungry participants looking to enjoy the pulled pork sandwiches and coleslaw. The event also featured raffles and live entertainment, contributing to the over $5,000 raised for CF research and care. A number of CF Canada staff and chapter volunteers were in attendance, along with members from throughout the Windsor-Essex-Kent area. Advocis Windsor has been a fantastic partner for the local chapter, and we can’t thank them enough for their ongoing support!
Parent Support Group:
While Windsor certainly puts the “fun” in fundraising when it comes to supporting CF initiatives, support is also a major focus in the community. A local CF mom hosts annual CF Parent Support Group meetings monthly, allowing parents and family members of those with CF a place to share their experiences, learn from one another, and have a source of support.

We are tremendously thankful for all of our CF community and chapter volunteers, we couldn’t do any of this without you! 
Kin Krowd - Dustyn Pumfrey
Kin Canada has been a valued partner of Cystic Fibrosis Canada for over 50 years. During this time, Kin and Kinette members across Canada have worked tirelessly to coordinate BBQs, luncheons, dinners, walks, rides, and so much more, all in support of our united goal to END CF.

To help recognize this tremendous partnership, we sat down with Dustyn Pumfrey, an 18+ year Kin veteran and former Service Director for District One to find out what keeps him invested in the cause.
How long have you been involved with Kin?

This coming year will represent my 18 th year in the organisation, all of them with the Kinsmen Club of Dresden.

What’s your favourite part about being a member of Kin?

My favorite part beyond the community service we do is the fellowship our organization fosters. The fellowship is what makes volunteering fun and much more rewarding. Fellowship is kind of like the frosting on the cupcake of volunteering. If you enjoy being involved in helping to make your community a better place and you can have fun while doing so, then it makes your efforts so much more fulfilling.
What made you want to get more involved with Kin and their support of Cystic Fibrosis Canada?

I was asked to take on the role Cystic Fibrosis/Service Director for District One several years back. I had always been aware of our association’s efforts in support of Cystic Fibrosis Canada, but it when it became my role to help clubs raise funds and awareness, then it became a bit of a passion of mine. During my year as, Cystic Fibrosis/Service Director I was able to travel all around my district helping the clubs out at their events raising funds and doing service work in their communities. The position also opened Cystic Fibrosis Canada’s network of chapters and volunteers to myself allowing me to introduce the local chapters and their volunteers to our local Kinsmen and Kinette clubs.

What has been the most rewarding or special moment during your time with Kin and Cystic Fibrosis Canada?

I was able to travel to our National Convention in Edmonton and accept our Bill Skelly award on behalf of the Tilbury Kinsmen and their road toll for CF. Bill Skelly was in attendance at the awards so I was able to get my picture taken with Bill holding the award. Bill was also able to autograph the award for the recipient club. I have also had the pelasuire of meeting Doug Summerhayes on several occasions and have had some great conversations with him regarding the history our two organizations share.
Are there any upcoming Kin events that you’re looking forward to this fall?

Our Zone will be hosting our second annual Zone G Cystic Fibrosis information night this fall and we hope to build on the inaugural events success last year.

What are your hopes for the Kin and Cystic Fibrosis Canada partnership for the future?

Ideally our partnership could come to an end at some point because our efforts have helped to find a cure for Cystic Fibrosis. However until we can change the meaning of the initials CF to Cure Found we will both continue raising the funds and the awareness needed to help make the lives of our benefactors long and healthy. Only through continued support and cooperation between our two association will this be possible.
What would finding a cure or control for CF mean to you?

It would mean that our time and efforts could now be focused on other diseases and endeavors. We are volunteers and that is what we do. When one task is finished we search out a new one and focus our efforts there.

We'd like to extend a huge THANK YOU to Dustyn, and to everyone at Kin Canada, for all their tremendous work over the years! We truly wouldn't be where we are today without all your help!
Healthcare Hub - CF Clinic Accreditations
One of the premier programs within the Healthcare portfolio is the Accreditation Site Visit program. By visiting CF clinics across the country, Cystic Fibrosis Canada is able to ensure accountability for the grants it provides to each clinic, and is also able to promote a high level of consistent care at each centre, through networking and the sharing of best practices among healthcare professionals.

With a team of accreditors that includes visitors from other CF clinics in the country (a physician and nurse) and Cystic Fibrosis Canada leadership, each hosting clinic has an opportunity to review medical protocols and clinical procedures, provide tours of the in- and out-patient facilities and of the pulmonary function testing and microbiology laboratories, and engage in discussions with institutional administrators and financial representatives, and with patients and families who attend the clinic and use its services.

Clinics are visited on a rotational basis, a few each year. So far in 2018, three visits have taken place in Ontario: at Health Sciences North in Sudbury, at Windsor Regional Hospital, and at the Grand River Hospital in Kitchener. Following each visit, recommendations are made that will help to align each clinic with others in Canada. And the visitors, who typically come from other provinces, are able to observe activities at another site, offer suggestions, and hopefully learn new insights.
Grand River Hospital CF Clinic Accreditation 2018 Site Visit - Kitchener, Ontario
Upcoming Events
Grady Family Music Night
Peterborough: October 13, 2018 - www.facebook.com/events/671607173217733/

Ride for 65 Roses

Uncork the Cure
Ottawa: October 18, 2018 - www.uncorkthecure.ca

Fusion: Shamrock Shenanigans
Markham: October 20, 2018 - www.fusiongala.ca

Scotiabank Toronto Waterfront Marathon
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