My Right To Try: because everyone deserves to live healthy and everyone deserves to fight the battle of their illness the way they feel best. As long as one is in sound mind, only they can ever fully know or feel what their body is going through and how a treatment is working even before the doctors or tests can reveal anything. Doctors were taking a year to; put me through tests and EMGs to "rule out or confirm". I knew what was happening to my body, after much personal due diligence, I theorized a diagnosis which was confirmed a year later. I will certainly know, if and when, any potential treatments have any kind of affect to slow my progression, before any doctor or test can say so. But in order to do so, I need to fight for my right to try. I deserve the right to try because what good is aiming for a goal, when you don't try all the possible ways to reach it, before it's too late. How many more people are going to continue to lose their abilities or die because we are all "waiting". My goal is to live a life without ALS or limits; the right to try act will remove all barriers for my freedom and my choice with this goal.
I've dedicated the remaining years of my life, driven to accelerate access to potential life-saving treatment for Canadian ALS patients. I am a founding member of the 'Right To Try Act', and a leading member of Canada's leading National ALS Charity, the Adaptive Canuck ALS Foundation. www.alscanuck.org
Support the 'Right to Try Act'. Please consider making a donation of $5, $20, $50 or whatever you can. Your contribution helps cover associated costs to retain representation, travel to meet with MP's, social, online & traditional media communications. Currently, these costs are being paid by Canadian patients living with a terminal illness. It is through the help and generosity of people like you that we are able to continue our work. Your compassionate support truly makes a difference!
Terminal Illness - ALS
Diagnosed January 2014 at 56 years old.
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