Message from the director: SVB number 45

January 27 2022

When resilience is expressed in unison...

“You don't get rid of something by avoiding it, but by going through it! ”

Cesare Pavese

It's undeniable, the word that comes to mind to describe the past year is “resilience.” Despite the many storms we've been through, both globally and locally, the resilience of our cystic fibrosis community continues to amaze me.

Since its origins in 1985, Living with cystic fibrosis has continued to change, adapt and evolve, especially over the past year. As the pandemic continued, our CF community, which was already very united, grew closer and maintained a warm and open dimension.

Speaking of evolution, we welcomed the recent announcement that Trikafta (éléxacaftor — tézacaftor — ivacaftor and ivacaftor) was added to the list of medications covered by the Quebec General Drug Insurance Plan. Indeed, doctors in Quebec now have the opportunity to file a claim for reimbursement for this medication for their eligible fibrocystic fibrosis patients (i.e. people aged 12 and over who have at least one F508del mutation in the gene regulating transmembrane permeability in cystic fibrosis [CFTR]). We highlight the great collective work of all the stakeholders to have succeeded in transposing this dream into a tangible reality, allowing a marked improvement in the conditions and life expectancy of people living with cystic fibrosis.

However, as this measure is newly in force, we note that some of our eligible members have experienced failures in its practical application. I remind you that our organization is also there to support you in this movement of individual defense of your rights and interests, so do not hesitate to call on us if necessary. Indeed, you are at the heart of our mission, so we have the duty and a pleasure to better help you in your CF journey.

In addition, our on-call team has also evolved and grown. On the one hand, we recently welcomed Valérie Lacroix as a special education technician. With a background as a practitioner and living with cystic fibrosis herself, Valérie is there to serve our members and offer them an attentive ear while directing them to the resources appropriate to their needs. Do not hesitate to contact her by email at valerie.lacroix@vivreaveclafk.com, if only to have a chat or to discuss a project idea that you have in mind.

On the other hand, we are also pleased to welcome Sylvie Belval to our team until next summer as an accounting and administrative support technician. For nearly 15 years, Sylvie worked closely with the CF community when she worked for the former Quebec Cystic Fibrosis Association. People and numbers are his strong suit! You can say a nice hello to him at sylvie.belval@vivreaveclafk.com.

Since there is still uncertainty about major gatherings, we have chosen not to postpone the festivities on the 35th.^E anniversary of the organization in 2022, but rather to celebrate with great pomp and circumstance our 40 years of existence in 2025. Wow, what a party it will be! Do not hesitate to contact us to send us your ideas for celebrations and projects, and to get involved as well. We are always open to welcoming new volunteers to serve on any of our committees. If you feel like it, contact me at DG@vivreaveclafk.com.

In conclusion, I would like to highlight the essential contribution of our Editor-Coordinator who is staying the course after more than four years of loyal service, and I would like to say a big thank you to all our volunteer members who invest wholeheartedly in our governance, our committees and our activities: you are the perfect personification of the “by and for” that sets our organization apart so well.

Happy reading!

‍