By Rhonda Massad
Thanks to a $15 million investment in Amyotrophic lateral sclerosis (ALS) the vision of making ALS treatable gives former West Islander and spokes advocate for ALS, Carol Skinner hope as she battles the deadly disease.
On the anniversary of the announcement of the 2014 ALS Ice Bucket Challenge results and partnership between ALS Canada and Brain Canada, the ALS Societies across Canada and the ALS Canada Research Program in partnership with Brain Canada, announced, last Thursday, the final recipients of the 2015 grant competitions. In one year, $15 million has been invested in the exciting ALS (amyotrophic lateral sclerosis) research in Canada, representing a ten-fold increase over historical annual commitments.
“Because of this support, I have hope where I once had none,” Carol said on the day of the announcement. “Every Canadian that has supported, donated, advocated and participated in fundraisers for ALS has made today possible.”
After the announcement last week Carol spoke to supporters at a fundraising celebration at Table 09 in Pointe Claire.
“I am very proud to be in Montreal today,” she said to a silent crowd, “to be a part of this historic announcement for ALS research. This is where I grew up, worked at summer camp, met my best friends and discovered my hopes and dreams.”
The diagnosis in September of 2013, at the age of 41. Carol was given 2 to 5 years to live. According to Carol the average survival rate with amongst those living with ALS is 3 years.
“It is a day that I will never forget. An unwanted marker imprinted in my life.”
“ALS, being a degenerative disease is terrifying to live with. Its progression takes away ability and autonomy. Day by day I discover activities I can no longer accomplish on my own. My struggle is not unique, this is a shared struggle. The history of the disease is over 140 years since definition and is dramatically underfunded.”
Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig’s disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles.
Carol shares her wisdom and experiences about living with ALS on her bloghttp://www.livelovelaughwithcarol.com .