The ALS Ice Bucket Challenge was one of the biggest online movements of 2014. Videos of people dumping ice water over their heads to help raise money to find a cure went viral worldwide.
The campaign raised a lot of awareness and a lot of money and a portion of that is helping to support Maritimers living with ALS.
Judy Starritt says the ALS society of New Brunswick and Nova Scotia has been incredibly supportive since her diagnosis a year ago and she was thrilled when her friends and family completed the ice bucket challenge last summer.
“Because it made people aware of the disease,” says Starritt. “Before that, very few people really knew about ALS. It was awareness that was so wonderful.”
Terri Cooper is the client services manager at the society. She says the ice bucket challenge helped start a conversation about ALS.
“After about a week of it going viral worldwide, we started to notice there was donations coming in,” says Cooper.
Between New Brunswick and Nova Scotia, the movement brought in a total of $775,000.
Some of the money was put away to help sustain the society's equipment loan program.
They have also recently added $100,000 worth of new gear, including two high-end power chairs.
“The power chairs have the ability to recline, to tilt, they are equipped with a BiPAP tray, we put a higher end controller on it, so it can control the environment controls. It can turn on the TV, turn on lights,” says Cooper.
They are also equipped with attendant control, so a caregiver is able to operate the chair.
Head array technology allows the user to control the chair with only movement of the head.
Starritt says ALS is an expensive disease and she knows the value of the equipment loan program first hand.
“At night I use a BiPAP to assist in my breathing, to give my diaphragm some rest and immediately, ‘here you are’ and I just had to sign a piece of paper, there it was,” says Starritt.
Another $415,000, went directly toward research and was matched dollar for dollar by Brain Canada.
Starritt says the research goes beyond ALS.
“The thing with ALS is it's like a pyramid and ALS is at the top and all the research filters down to MS, Alzheimer’s, Parkinson’s,” says Starritt.
The total amount of money contributed to research in Canada last year was $20 million, the largest investment to date.
Testing is being done on a promising drug, intended to slow progression of the disease, which has already been approved by Health Canada for treatment of other neurological disorders.