A common history of success

From the SVB2017

By Tomy-Richard Leboeuf McGregor
Editor of SVB
Executive Director

It is with great pleasure that I present to you the 2017 Edition of the SVB, the official magazine of Vivre avec la fibrose kystique. For Montreal?s 375th anniversary, the choice of the cover page is not anecdotal. We find our president, Charlène Blais, at the top of Mont-Royal with her two young children. In the backdrop, we see the metropolis of Québec: Montréal. As a matter of fact, there are 2 dates to remember: 1642 and 1985.

In 1642, Jeanne Mance and Pierre Chomedey de Maisonneuve found the City of Montréal. This small, poorly populated, religious community had a rough start: threats from Mohawks (Iroquois) Indians and the rise of the tides of the St-Lawrence River nearly destroyed the city several times.

Above adversity, and the hesitations of the representatives of the King of France, the creativity and resilience of our ancestors allowed Ville-Marie (Montréal?s first name) to survive and grow until the XXIst century. Now, the city is the second French-speaking city in the world. At the beginning, Jeanne-Mance, our founding mother, built a hospital that still exists today: the Hôtel-Dieu of Montréal. This is where, in our modern days, we find the largest cystic fibrosis clinic in Quebec.

Three and a half centuries later, in 1985, our organisation is founded by a few young and impetuous free and determined spirits. Courageously, they regrouped and faced many challenges, most notably: financing the organisation and fighting against crossed-contamination. Very few people in the cystic fibrosis community were convinced that having 2 distinct entities working for the cause were necessary. However, as time went on, we were able to build many partnerships, insuring our existence and financing. We must also be proud of our crossed-contamination policy which still is in effect today and allows us to organise meetings and events of all types while preserving the health of those living with CF.

Nearly 30 years later, we are stronger than ever! We?re among the first most important information diffusers concerning CF in the world. While research has allowed us to advance considerably (the median survival age being of 53 now), we begin 2017 with confidence. We are certain that the best is to come. In fact, we can now continue our mission without any of our past fears and we?ll be able to offer even more services to our community.

While we have 375 reasons to celebrate our great city of Montréal, we have thousands more reasons to be happy and enthusiast towards our organisation. Collectively, we have been able to keep track of our objectives and have ensured a healthy governorship of the organisation. I?d like to warmly thank those who participated in our story.

On a more editorial side, I?d like to remind everyone of our ongoing battle to have in-vitro fertilization covered by public Medicare again in order to allow women like Charlène to give birth to children and know the great happiness of founding a family. The two children on the cover page, magnificent twins, were conceived thanks to that medical technique. I?d also like to remind everyone that we are still waiting for newborn screening to be accepted by the Quebec government. We are one of the last few remaining places in the west to not have this service. Let?s continue our battle and don?t forget to speak to your MPs about this important subject.

Just like Montréal, bastion of French culture in North America, Living with Cystic Fibrosis, the only organisation in Quebec to be present and offer direct help to CF patients, is unavoidable for those living with CF and their loved ones.

We?ll always be there for you.

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