Cystic Fibrosis Canada - Victoria Chapter

We need a volunteer for a conference in Victoria on July 11, 2024 from 12:00pm to 4:00pm. DM for more information! We really appreciate your help and support!

Hey Victoria! Come join us for the CARSTAR Victoria carwash and BBQ for Cystic Fibrosis Canada on May 25th! Come from 10:00 am to 2:00pm!

Location: 3164 Gamma St.

See you out there!

“We want to see a world where CF is no longer a life-limiting condition.” - Amy and Allison Watson, sisters who share their inspiring journey living with cystic fibrosis, pictured here with their brother.

Make a direct impact on the lives of Canadians with CF! Give today to help us reach our goal of raising $10,000 to help fund a research lab for one month.
Donate today: https://bit.ly/3TxjgFV

We have some exciting news! 🎉 To celebrate their 30th anniversary, our partner, CARSTAR Canada is sponsoring 30 community events in the 20th Walk to Make Cystic Fibrosis History on May26.

What a wonderful way to community impact! 🌟

Thank you CARSTAR Canada for your continued support and partnership!

Meet Chanelle Lafleche, a 25-year-old woman from Cornwall living with cystic fibrosis. Chanelle is falling through the cracks of our drug approval system and she desperately needs Trikafta. In January, her right lung was removed and lung function in her left lung has dropped to 30%. While Chanelle does not have the most common gene mutation for CF –F508del, the only mutation Trikafta has been approved for in Canada, her rare mutation could benefit from the drug. Those with Chanelle’s genetic makeup in the United States have been granted access to the drug through the use of laboratory evidence, but not in Canada.

“The situation with the drug in Canada is complex, but officials could give it to Chanelle and the more than 200 patients like her in Canada under extraordinary access programs.” Says Dr. Paul Eckford, Chief Scientific Officer, CF Canada.

Cystic Fibrosis Canada is calling on Health Canada to make it easier to expand access to drugs for rare diseases, including Trikafta, through the use of laboratory evidence – just as the US, France, Israel, and England have done. We also need Canada’s public drug programs to cover Trikafta for all who could benefit from it. Read more on Chanelle’s story in the Ottawa Citizen: https://bit.ly/3Ow8RJe

🚶🎟️ Join the Walk To Make CF History's 5050 lotto and make a difference! Tickets are on sale until Monday, so don't miss out on this incredible opportunity. Grab your chance to win big and support a worthy cause. Get your tickets now at www.rafflebox.ca/raffle/cfc-bc/1

I am the oldest of four siblings. My sisters and I all dance, and I enjoy all styles of dance while also teaching it two days a week to young dancers. This along with school, the gym and making time for friends keeps me busy. Sometimes it’s exhausting finding the time for all the extra care required for my cystic fibrosis.

In the last few years, it’s felt like the majority of news in the CF community is about modulators and what a miracle they are. To an outsider, this may give the impression that CF is cured and hearing how happy people are that there’s a cure is frustrating, especially as someone with two rare mutations. Not only are modulators not a cure, but they do not work for everyone. Our family worries about the battle ahead to advocate and keep fundraising for something that will work for everyone. We need more options to treat lung infections. We need to continue research in taking care of an aging CF population and the complications that come with age. We can’t leave people behind.

I want to keep dancing, teaching and growing with my friends and family. I hope I can count on you to join us in the Walk so we can find new treatments that work for everyone, and hopefully even a real cure. Together we can go . Register today: https://bit.ly/3JcRIlB

💫 Be part of the movement! Want to have fun while helping Canadians with cystic fibrosis live longer, healthier lives? Join the Walk to Make Cystic Fibrosis History on Sunday, May 28.

🚶‍♀️🏃‍♀️Make CF History Want to have fun while helping Canadians with cystic fibrosis live longer, healthier lives? Join the Walk to Make Cystic Fibrosis History on Sunday, May 28.

Last chance to enter into the Shinerama 50/50 raffle! Deadline to buy tickets is TONIGHT at 11:59pm.

Shinerama is Canada's largest post-secondary fundraiser in support of Cystic Fibrosis Canada. Over 20,000 student volunteers from across Canada come together every year to make a difference in the lives of those living with CF.

Link in bio to purchase tickets!

Join us tonight at 7:30 p.m. ET for a for a Facebook Live tonight. Our CEO, Kelly Grover and Kim Steele, Director, Government and Community Relations will answer your questions and discuss the announcement today.

It is a historic day for the rare disease community in Canada.

In an announcement today, the federal government provided more details on its 2019 promise to improve drug access for Canadians with a rare disease, a strategy that Cystic Fibrosis Canada and this community has long advocated for. In its announcement, the government has committed up to $1.5 billion over three years in support of the first ever National Strategy for Drugs for Rare Diseases.

We are reviewing the details of this announcement and will continue to update you as we learn more in upcoming briefings. For now, we are pleased to share this news with the CF community, which has fought so hard for this day.

✨ CONTEST ALERT! ✨ We want to offer a special opportunity for you to become a Team Captain and start your own Walk team! If you register your team before April 19 and raise $1,500, you'll have the chance to win exclusive gear for your entire crew – including hats, tote bags and T-shirts! 👕

Be sure to visit our new Walk website, which has all the information you need to register for this year's event along with fundraising tools and tips to help lead your team to success.

Good luck to all our past and future Team Captains, and we can't wait to see you and your teams on Sunday, May 28! Register your team now: https://bit.ly/3JcRIlB

Our family loves outdoor activities like hiking and we visited the Gaspé Peninsula last summer to climb Mount Xalibu at 1,140m! We never imagined that would ever be possible as Maxime has CF, diagnosed at only three weeks old. When we first heard that news, it was a lot to take on mentally and raised many questions. What was even more challenging were the questions we had to answer that are difficult to hear because they hurt you over again: “Will he need oxygen?”, “Why can’t you replace his lungs to get rid of the CF?” and the worst of all “Will he die from this?” It’s not normal to talk about your child’s death, especially when he’s just 2 months old.

At eight years old, Maxime is living a full life with the help of treatments and new medications like Trikafta, and the support from our CF community. He loves playing with his Legos, reading, doing puzzles, even escape rooms, along with camping and hiking – 24 hours is not enough time in a day for him! Reaching the top of Xalibu helped us see that anything is possible for him with the right care and support. He has taught us what resilience means.

Will you walk with us to help Maxime and others living with CF reach new heights? Register for the Walk now to go ! https://bit.ly/3JbDth5

🧡Participate in the Shinerama 50/50 Raffle this March!🧡

Shinerama is Canada's largest post-secondary fundraiser in support of Cystic Fibrosis Canada. Over 20,000 student volunteers from across Canada come together every year to make a difference in the lives of those living with CF.

https://shinerama.rafflenexus.com/

📢 Today is the LAST DAY that you have a chance to win a private session where you can ask any question to two of the greatest minds in CF!

Register now and raise $100 by 11:59 PM PST tonight and you’ll get a chance to win an exclusive virtual Q&A with Dr. Brad Quon, Associate Professor at the University of British Columbia and Adult CF Program Research Director at St. Paul’s Hospital, and CF Canada’s Research Program Director Dr. Paul Eckford.

Register now! Together, we’ll go ! https://bit.ly/3JbDth5

This March, meet Brenda Mackenzie, a powerful mom and committee member who is riding for her two sons living with CF.

"GearUp to me is all about perseverance. To keep going even when it gets hard. To ride when others can’t, and to do my part to help end CF and find a cure for my boys."

"I have been blessed with 3 wonderful sons. Two of which have CF. It was in April of 2011 that my middle son after chronic nasal infections and repeated coughing and what seemed like an endless cold, that he was diagnosed with CF. Being a genetic condition, my other two boys had to get tested and was given the news that my oldest had it as well. Life wasn’t so simple after that. They were 12 and 9 at the time and didn’t understand why they had so many doctor’s appointments and hospital visits. As a parent I felt helpless in not being able to fix this for them."

"So in 2013, I stepped forward and signed up to do the GearUp4CF two day ride from Crescent beach to Manning Park. It was not an easy ride but I was so pleased with all the support I got and how many amazing people I met on the ride. After feeling helpless in all other aspects of dealing with this disease, it gave me a purpose. I continue to ride for my boys and help raise funds to find a cure for all with CF."

Thank you for sharing Brenda!

To hear more about Brenda and her personal story with CF check out the podcast "GearUp4CF - Why I Ride" available on Spotify!



Register today: https://www.gearup4cf.com/

🚶 Will you walk? Want to have fun while helping Canadians with cystic fibrosis live longer, healthier lives? Join the Walk to Make Cystic Fibrosis History on Sunday, May 28.

We are excited to announce Shae Fowler has joined the team as our new Event Specialist in BC. Shae comes to us with over 10 years in event management with a strong background in fundraising and volunteer management. She will manage the portfolio of our Walk to Make Cystic Fibrosis History in Vancouver and the 65 Roses Gala!

Shae is very connected and outgoing, and under her portfolio, we are excited to see these events excel to a new level!

Welcome to the Cystic Fibrosis Canada team! 👏🎉

The 2023 GearUp4CF route is now available! Check out the link for our Strava page where you can find all the details! Make sure to follow us for the latest updates. 🚴‍♂️🌟

https://www.strava.com/routes/3057186957279042020

“For 5-year-olds with CF to go further, they need extra care,” says Melissa, mom to Leroy, who lives with CF. “We participate in the Walk because we love our CF community. We want to support others on the same journey. If we are going to go further, we need you to walk with us.”

Will you join Melissa, Leroy and the CF community to go on Sunday, May 28, and register for your Walk today? https://bit.ly/3JbDth5

Hello BC! Register now for the fully supported 2023 GearUp4CF 1-day ride. The community is coming together to smile, sweat, cycle and fundraise and we want you to join us! 🤩🚲 https://www.gearup4cf.com/

Get ready for our GearUp4CF after-party lunch celebration on Saturday June 17! We will be celebrating the riders, their family and friends, and the CF community! We hope to see you there. 🍉🌭🏆