New Brunswickers impacted by mystery illness come together for the first time

N.B. families share stories on mysterious disease New Brunswick families and patients connected to the mysterious disease share their experiences in Moncton. CTV's Laura Lyall reports.

For the first time on Saturday, those at the 'Centre of Mysterious Neurological Syndrome' in New Brunswick came together for an in-person meeting in Moncton to share stories and demand answers, and action, from the province.

"It really was meaningful and powerful and you know, this is going to be the start of a movement for answers. There is strength in numbers and I mean, we saw it today," says Steve Ellis, son of a patient with the disease.

Dozens of people attended the meeting, including the family of Gabrielle Cormier, who was diagnosed with the mystery illness at the age of 20.

Stacie Quigley Cormier says for a long time, her step-daughter felt as though she was alone in what she was dealing with.

"So for her to learn that there is a group of people that are going through similar things and for us to become a community together and a support group together, it's really invaluable," says Cormier.

Siblings Jill and Tim Beatty lost their father, Laurie, in 2019. Tim says there is a growing sense of anger with how the situation is being handled.

"A growing anger that we as citizens have had to come this far, people have had to witness the amount of suffering with their loved ones, so that we finally, we have to do something and our government hasn't," says Tim Beatty.

"We are here for a purpose and a reason and we are not going away. These people are suffering and we need to have answers, we've got to get the science done," says Jill Beatty.

Ellis, who started the online support group on Facebook, says his father has been abandoned by the government and steps need to be taken.

"We still want Dorothy Shephard and Dr. Jennifer Russell to authorize the reinstatement of the collaboration between New Brunswick and the federal counterparts," says Ellis.

Ellis calls for more open communication from the province.

"We're not being spoken to, we're not being asked questions, we're not part of a conversation so this is where we have great concerns because we're the ones being affected and yet we are the ones that know the least," says Ellis.