Friday, December 20, 2019
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A Message from Cystic Fibrosis Canada
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2019 has been another fantastic year for the Ontario Region, and we cannot be more amazed by the support and dedication throughout the CF community. From hosting fundraisers to petitioning for access to drugs, the community has been beside Cystic Fibrosis Canada in every step we take towards finding a cure or control for CF. We are so grateful for the time and effort that our volunteers, chapter members, committees, coordinators, advocates and partners put into helping us reach our goal.
We wish you and your loved ones a wonderful holiday season and all the best in 2020.
Sincerely,
Cystic Fibrosis Canada - Team Ontario
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CF Stories - Arash Sorkhabi
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My name is Arash Sorkhabi. I am 36 years old, studied IT programming in college, and worked as the Purchasing Manager with an IT company in Iran. My twin brother and I were diagnosed with CF, the most common fatal genetic disease according to CF Canada, at age four
.
I have two siblings. We grew up in my parents’ house until my sister immigrated to Canada many years ago, followed by my twin brother four years ago. We always planned to meet up at least once a year until two years ago, when my twin brother fell ill and was hospitalized due to increasing sputum production and shortness of breath. He couldn’t afford to travel long distance due to the fact that he was listed for double lung transplant; thus, I decided to visit him in Canada. It was amazing to visit not only the family, but also the Canadian society. Evidently, besides the treatment and the all effort the CF clinic have made, the visit proved to be a very positive experience as my brother’s health improved. We both were happier, more energetic, and much more optimistic, which helped him feel stronger and recover from his infection.
Consequently, my brother was no longer required to undergo transplant surgery and his health team removed him from the transplant list for the time being. I strongly believe what doesn’t kill you, makes you stronger. My brother and I share a very strong emotional connection, and the separation took a serious toll on both of us. After that trip, I decided to visit my family again because we all felt much happier when we were together. I returned in 2018 to fulfill the emotional needs of family and myself; especially my twin brother.
After visiting the CF clinic in St. Michael’s Hospital, and joining the Toronto CF community on Facebook, I was deeply moved by learning how people are motivated to help in Canada. I am inspired to create a community for CF patients in Iran to provide information and emotional support. There has never been an NGO for CF in my home country. My plan is to use social media and technology to encourage hope and engagement. I want the world to know that Canada inspired me to walk this way.
Sincerely,
Arash Sorkhabi
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Vibrant Volunteers - Jessica Fazio
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I got involved with Cystic Fibrosis Canada in 2014, when the Student Government at my University posted the “Shinerama Coordinator” position. I knew nothing about Shinerama or cystic fibrosis, but I had a desire to make positive change on campus and applied for opportunity. After my third year running the Shinerama campaign I was invested; I had met the most amazing people who had been touched by CF, I had seen the impact of the work through research and medical advancements as well as directly on folks lives, and wanted nothing more than to be a part of the work to make CF stand for #curefound. Right from the beginning it was really inspiring to be a part of a cause that was making huge strides for people living with the disease.
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I love volunteering with CF Canada for a number of reasons, but I think the biggest ones are (1) the absolutely incredible people we get to work with, from CF Canada staff to volunteers to CF families right across the country, and (2) the incredible impact that this cause is making, and how we can see positive outcomes from our work! I am really looking forward to what the next few years look like, and I am SO hopeful that we can #endcf.
After my 3 years with Shinerama, I started volunteering with CF Canada, first through the Princess Ball and then with the chapter at large. In 2018 I joined the chapter's Board of Directors, and in 2019 when the Presidency position became vacant, I was elected to fill the position. This opportunity has been so important to me because we have such an amazing chapter in Windsor-Essex/ Chatham-Kent, with amazing CF families and volunteers, and I really wanted to help realize the full potential of the volunteers sitting around the Board table. That has been our goal this year and into the near future, to build a strong team of volunteers who can really support and elevate the exciting work our chapter is doing.
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Finding a cure or control for CF will mean that the strongest, most brave and admirable people I have been given the opportunity to meet would be able to breathe easy, and THAT would just be a dream come true. It would mean that thousands of Canadian children, adults and young people, could lead healthy and thriving lives. I am honoured to be a part of this journey!
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Do you know a volunteer that you want to recognize for an award?
Good news! Cystic Fibrosis Canada's 2020 Volunteer Awards Program is accepting nominations for National and Regional Awards.
Volunteers are the backbone and leaders of Cystic Fibrosis Canada. Thanks to their time and effort, we have been able to make significant progress toward ending cystic fibrosis while bringing it to the forefront of Canadian and regional conversations.
The Volunteer Awards Program recognizes and honours individuals, groups and organizations whose volunteer contributions to Cystic Fibrosis Canada and its local chapters have made a significant impact on the lives of individuals with cystic fibrosis.
The official call for nominations for both National and Regional Awards is
open until February 28, 2020 at 11:59PM EST
.
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Community Corner - Thunder Bay
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Thunder Bay might be far from most metropolitan areas but they are a mighty chapter. In fact, this year they celebrated their 50 year anniversary! An appreciation event was held in town bringing together over 30 volunteers, Kin members, fundraisers, community partners, families and donors. Also in attendance was newly minted Minister of Health, Patty Hajdu, who used this as her first public community event and speaking opportunity in this position.
Current president Barb Thomson and her chapter volunteers organized a wonderful event reminding each of us why our commitment to the cause is so important. Past president and past national Kin president James Doerr shared his history with the chapter, and the first ever CF chapter president Liz Bortoluzzi was there to tell the group about her son with CF, who passed recently at 52 years of age. The media captured all the speeches and spread the news about the wonderful work happening in Thunder Bay with cystic fibrosis, which includes the fact that they have already raised over $1,000 for Walk 2020!
Congratulations and thank you for 50 marvelous years!
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Fundraising Fun - Noralle Candles Inc.
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The CF community is host to an array of amazing fundraising initiatives and activities, and so we were delighted when Sylvie Bennink of Noralle Candles Inc. reached out to us with an idea. Inspired by her son's CF diagnosis, Sylvie was determined to make a difference for him and the 4,300 other Canadians living with the disease.
This is Sylvie's story:
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Cystic Fibrosis is a condition we didn’t know much about until my son was diagnosed at birth in 2017. We went through an intense grieving period. Heartbreaking questions and scenarios arose: “Will we outlive him? Is he going to suffer? Will we spend most of our time in the hospital? How much time does he have to live? How would we explain things to his sister if this condition takes him away?” But as parents and advocates for our son, we couldn’t let ourselves dwell on these emotions. Our family joined the annual walks, and with the help of generous donors we were able to raise a significant amount. However, we still felt like we needed to do more.
As business partners we embarked on an entrepreneurial project called Noralle. We’re a company that makes high-quality scented soy candles, wax melts and tealights. Cystic Fibrosis Canada was gracious to allow us to use their logo on our products for our fundraising campaign, with the same goal in mind: to bring an end to this disease.
For every sale the campaign makes, we’ll donate 25 percent of the proceeds to Cystic Fibrosis Canada. We pray that these products will assist with fundraising efforts for research, supporting and advocating individualized care and bringing about more awareness, but most importantly, helping to bring us to the finish line: a world without cystic fibrosis. We’re so close!
We will soon have the fundraising line ready to purchase. To find out more, please follow up
@NoralleCandles on Facebook, Instagram and Twitter, or our website
www.noralle.com. Thanks for your interest; your contributions and encouragement will make a difference in our lives, and cause a strong positive ripple effect that will benefit other families in countless ways. You may contact us at
info@noralle.com.
Sincerely,
Sylvie Bennink
Noralle Candles Inc.
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Staff Spotlight - Monika Petridis
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What position do you hold?
Fund Development Manager for Ontario North & East
How long have you been with the organization?
Since 2017
What made you first join Cystic Fibrosis Canada?
One of my mentors worked at the organization and encouraged me to consider joining as CF Canada was a progressive organization making great strides in the field. I saw the impact employees were making and immediately wanted to be part of the movement and change.
What’s your favourite part about working for Cystic Fibrosis Canada?
Working directly with families and seeing how my work is making a direct impact on lives. I know who I am working hard for every day.
What has been the most
important
moment during your time with the organization?
The first person I ever met with CF also was the first person who I knew to pass away from CF. She made a huge impact on me and how I choose to show up every day to work. I don’t want to experience that again with any of the families I have grown to love and support.
What would an end to CF mean to you?
I believe a cure or control is within our reach and will be proud to be part of that historical moment when it happens.
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Kin Krowd - Bea and Dave Crowley
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Bea and Dave Crowley were named Life Members of Kin Canada in October 2019. Life Membership is the highest honour that the Kin Canada Association has for clubs to recognize the contributions that members have made over a sustained period of time in service to the community. Bea and Dave embody the Kin spirit in everything they do and are synonymous with what the Kin in London and District represent in serving the community’s greatest needs and as partners for life with Cystic Fibrosis Canada.
We asked Bea to share why she and Dave first got involved:
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How long have you been involved with Kin?
Dave and I have belonged to Kin for 11 years. We were first with the London CF Chapter.
What’s your favourite part about being a member of Kin?
I think what we like most about our Club is the family feeling and respect for each other. We have each others' backs. We look after each other.
What made you want to get more involved with Kin and their support of Cystic Fibrosis Canada?
As we are parents of a CF child it is very important to surround ourselves with people who support us through the hard times. They help us when in need. One time we could not afford the Trillium deductions for that quarter to get Andrew’s drugs and they pitched in so that we could get his drugs. When Andrew was in need of a lung transplant they were there to help with gas and parking money and to help us fundraise for our stay in Toronto for three months by setting up a Go Fund Me Page. Also both clubs give us the avenue to raise money for Cystic Fibrosis Canada to help others with CF and towards research which is key. We have our son and our family is still together and this is all due to research. Bottom line this is always our goal. (Our family).
Are there any upcoming Kin events that you’re looking forward to this fall?
The Kinettes had their Christmas Bazaar on December 7
th at Community Living London. Also we are knitting hats and scarves and gathering clothing, boots, coats and toiletries for the Homeless here in London. We go out for three hours once a week to distribute these items. The Kinsmen are preparing the Kinsmen Fanshawe Sugar Bush for March. Also we are preparing for a New Year’s Event to start off our 100
th Year Celebration of Kin.
What are your hopes for the Kin and Cystic Fibrosis Canada partnership for the future?
I hope Kin and CF always work together as we make things happen. We make things happen in what ever we do.
Hopefully some day we find a cure or an awesome control for all CF patients.
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"It was a pleasure to be able to attend and celebrate the occasion of Bea and Dave Crowley’s Life night with them and their family of Kin in London this past October. These two are so deserving of this honor. Life membership is the highest honor our association has for clubs to recognize the contributions that members have made to serve their community. Both Bea and Dave are synonymous with what Kin in the London district represent. Congratulations."
-Dustyn Pumfrey, Kin-CF Liaison Chair
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Congratulations Bea and Dave, and thank you on behalf of Cystic Fibrosis Canada and the entire CF community for all you have done towards our shared vision of a world without CF.
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Healthcare Hub - Resources and Information
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The Canadian Cystic Fibrosis Registry Report
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In November, Cystic Fibrosis Canada released the
2019-2020 Cystic Fibrosis Resource Guide as a source of information on government and community-based disability supports for people living with cystic fibrosis in Canada.
The services and resources that are available to people with CF and their caregivers in Canada vary between provinces, and it can be challenging to find or identify the services and resources one may need. The Cystic Fibrosis Resource Guide is intended to outline the services, programs, and resources available in each province and across the country, and provide guidance for the CF community to navigate local and nation-wide resources.
Included in the Resource Guide are outlined services and resources provided by the federal government and national agencies, as well as a breakdown of clinical and community services, programs and resources offered provincially or regionally. Additionally, there are tips and best practices for CF management, links to additional resources, and contact information for local Cystic Fibrosis Canada chapters.
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The Canadian Cystic Fibrosis Registry Report
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The
Canadian Cystic Fibrosis Registry (CCFR) is a collection of national CF patient data used to support and improve our knowledge and understanding of CF. This extensive resource has been involved in many important studies resulting in achievements in health outcomes for those living with CF.
Participating CF patients who attend any of the accredited 42 CF clinics across Canada are represented in the CCFR. Data are submitted by the CF clinics on behalf of patients. Given that the majority of CF patients attend one of these clinics, we are confident that the CCFR includes data on virtually all Canadians diagnosed with CF — giving a comprehensive picture of the CF population in this country.
Cystic Fibrosis Canada publishes the Canadian CF Registry Annual Data Report on national summary statistics to further educate and promote awareness of CF. We would like to acknowledge the involvement and continued participation of CF patients who consent to having their data submitted, and the exceptional effort and contribution from CF clinic team members who collect and enter the data.
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Advocacy and a Rare Disease Strategy
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People in Canada living with rare diseases, like cystic fibrosis, are all too familiar with the ongoing issue of access to life changing medicines. Cystic Fibrosis Canada has long pushed and advocated for better access to medicines like Orkambi and Kalydeco, and we’ve determined enough is enough – we’re going to the heart of the issue.
Creating a rare disease strategy would mean that Canada would develop a drug review process that fairly assesses drugs for rare diseases, including some CF drugs.It also means that Canada will become a more favourable country for access to rare disease medicines.Cystic Fibrosis Canada believes that people with CF and their loved ones have waited long enough for equitable access to medicine. CF is a progressive disease and people with CF do not have time to wait.
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Dollar Days on Clifton Hill
Niagara Falls: January 12, 2020
Windsor Princess Ball
Ciociaro Club, Oldcastle: January 18, 2020
Carleton Cup
Ottawa: January 25, 2020
London Princess Ball
Best Western Lamplighter Inn, London: January 25, 2020
Hamilton Princess Ball
Carmen’s Banquet Centre, Hamilton: J
anuary 26, 2020
Kitchener Waterloo Princess Ball
Bingemans-Embassy Room, Kitchener: January 26, 2020
Durham Princess Ball
Ajax Convention Centre, Ajax: February, 9, 2020
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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