The ALS Association is a Trailblazer


In 2012, our son at 27 years old was diagnosed with ALS We lived in Beverly our whole life, raised three kids everybody was doing you know storybook Pete was living the all-American dream you know big strong powerful athlete hitting home runs six hours after diagnosis we’re all sitting at the kitchen table and there was just this air of trauma and it was Pete that snapped us all out of it he said we’re gonna get to work this is my new team ALS is my new team ALS is a complicated disease that take someone’s ability to move their muscles away You lose the body and you keep the mind it’s a rare disease and that lifespan is estimated around two to five years we felt that if we could raise the awareness the funds would follow because people would have the same reaction we had it’s unacceptable that there is a disease in 2012 that still has had no progress in the fight against it Alright I’ve been officially called out by John Bolus and the Ice Bucket Challenge in return, I’m calling out Jeanette Senerchia you have 24 hours to respond you’re gonna donate $100 to the ALS foundation Here we go Accepting the Ice Bucket Challenge in support of Pete Frates and Team Frates Train three young men connected on Facebook because they were diagnosed with ALS and decided “hey! why don’t you
dump a bucket of ice on your head and challenge somebody else to do it and donate money?” and when Pete Frates and his family got a hold of it up in Boston it just went viral and so initially it was only a few
hundred dollars more then it became several thousand dollars more at it’s apex, we raised over eleven million dollars in one day within a few weeks, 115 million dollars just came flooding in worldwide it’s estimated about 220 million we had hashtags that trended for weeks there were literally mounds of cheques sitting on our conference table community volunteers coming in – sitting in our boardroom counting money there were just so many challenges and through technology that we weren’t
prepared to try to take in all of that money our lesson is that we have to be better prepared it was a real big cohort of people who wanted to connect with us through the Ice Bucket Challenge because we weren’t ready we probably missed a lot of those opportunities how do we make sure that if this ever happens again that we don’t miss any of those opportunities in the future and how do we learn to maximize the opportunities that we do have today the reasons we’ve been talking with Salesforce is we’re trying to get to a very sophisticated
integrated technology platform money drives progress when you pour dollars into research you find treatments, you find cures The day Pete was diagnosed we were told – no treatment, no cure today we have 86 drugs in the pipeline when the cure is found it’s going to come back to 2014 our goal is always to create a world without ALS we fund research but that’s not the only thing we do we make sure that people have access to that really cool technology access to therapies and care and we’ll do that into the future until we don’t have to do it anymore and I would be very excited for that day




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