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FIGHTING FOR HOPE

“The average life expectancy of ALS diagnosed patients is 2-5 years. Currently, the most promising treatment called NurOwn is going through a phase 3 trial, meaning that people who have been diagnosed and are potentially a good match for this treatment don’t have access to it unless they accepted into a trial. The trial is a double blind study, so even if you get accepted you only have 50/50 chance of actually receiving the treatment. Once your time in the trial ends, all participants are taken off the treatment even if it is greatly improving their lives. 

We respect the FDA, as well as the drug companies working hard to bring new treatments on the market. However, even with this respect for these agencies, it’s hard to understand why terminally ill patients have no possibility to access treatments already proven to be safe and affective.

This system is not working for currently diagnosed patients who have been given a year or two to live and their families who are losing hope. My hope is to shed light on this underfunded disease, start a debate and motivate people in power to make changes that allow terminally ill patients to access treatments still in trials but proven to be safe. We need currently diagnosed patients who don’t have a year or two to wait for treatment to have access to treatment since it can drastically reduce their suffering.” 

– Eric Stevens