Hello everyone –
WHO I AM: My name is Sonia Gobeil and I live in Montreal, Quebec (Canada). My 2 sons, now aged 18 and 15 years old, were diagnosed with a type of ataxia called Ataxia of Charlevoix-Saguenay (ARSACS) at a young age. ARSACS is a recessive ataxia; the second most common in the world after Friedreich Ataxia. Because the name of the disease refers to 2 regions located in the province of Quebec (Canada), many believe they or their ancestors must originate from Quebec to inherit this neurological condition. This is incorrect. ARSACS is a rare but universal disease. Cases have been reported in several parts of the world.
WHAT I DO: I work as a tax lawyer for an international accounting firm. Though my work is demanding and requires commitment in time, I am also an ARSACS advocate. For several years now, I volunteer for the ARSACS Foundation, a charitable organization based in Montreal. I co-founded this charity with my husband Jean Groleau in 2006 when our oldest son was diagnosed. At the time, the Sacs gene had been identified but no research was undergoing. This is the reason, we as parents, had no other option than to start this organization and try to move forward. “The move forward” meant establishing a foundation whose mission is to finance research projects that could lead to a treatment.
We contacted researchers locally and internationally to encourage them to work on ARSACS. In addition, we now also organize ARSACS related conferences, and the Foundation is the first stop when someone is diagnosed with this condition. In other words, our role is basically to act as a catalyst for science, patients, and organizations. It is hard work, but we knew it was hard work. At the time we said to ourselves “If we do not do it; who will?”
We are proud of the Patient Registry that was launched a couple of years ago. Several countries are represented, and we encourage people to register to have their voices heard.
The work with the Foundation has led me to meet extraordinary people in different fields and in different parts of the world. Such encounters have had a positive impact on me.
How has ARSACS changed life for you: ARSACS has changed many different things for me. Besides projecting what the future for my children will be, ARSACS has made me aware of all those affected with different disabilities and their place in society. I am always on the lookout for improvements for people living with a disability with regards to technologies, work availabilities, traveling facilities, rights, voice heard, etc. “Adaptivity” is a word that is now constantly present in my environment.
Upcoming Events: On November 4th, 2021, we will hold a half-day conference on ARSACS; the content of these conferences will be science-derived. Free registration for all. Our next important conference will be held sometime in May 2023 in Quebec City (Canada). Already we are planning this international conference which will focus on ARSACS and on the cerebellum.
Also on December 4th, 2021, we will be holding our fundraising gala called “Diner des Producteurs”. After almost 2 years of COVID, we are eager to launch the invitations and meet once again our community of supporters.
I encourage people interested in any type of ataxia to regularly visit the Foundation’s website www.arsacs.com or to follow our activities or news on Facebook or Twitter.
WHERE I am heading and what are my goals: Back in 2006 when I started advocating for ARSACS through the creation of the foundation, I always thought that somewhere down the road someone would suggest trying a drug that was not initially designed for ARSACS but such drug could alleviate the symptoms and therefore improve, in some ways, the life of individuals. This is where I am heading to.
Piece of advice: Move forward but do not go too fast – one day at a time – as life is never what you had expected or planned. Adapt.
Hobbies that you enjoy and find helpful to relieve stress: small things like reading magazines, talking to my family members including my brothers and sisters, taking care of my dog, or sitting in my favorite chair at the cottage contemplating nature.
Thank you Sonia Gobeil for your great efforts and spreading the word about ARSACS!
Please consider sharing your story – whether you have Ataxia, are a caregiver, friend, or relative. You may fill out the form below to get started.