Another Fever
November 22, 2019
We are not far from being a year into this diagnosis, and sometimes that feels like a lifetime and sometimes
CORD Conference
November 19, 2019
I attended the Canadian Organization for Rare Disease Innovation to Technology conference, it
Santa Claus Parade
November 17, 2019
We were lucky enough to be picked to attend the Santa Clause Parade with Make A Wish.
The Toronto Star
November 15, 2019
Vaughan mother wants world to know about rare disease that’s making her child suffer multiple seizures a day Terri Gortnar from Vaughan is a mother of two children who both suffer from a “rare” neurodegenerative brain disorder called Batten disease. Her 4-year-old daughter, Claire, was diagnosed at 3, and it “took about nine months of
Chicago
November 10, 2019
We are in Chicago attending a Battens Research Conference. This is our first one, and