Here I chat with Brian Wallach and his wife Sandra Abrevaya, co-founders of  I AM ALS and Synapticure.  At 37, Brian was diagnosed with ALS—on the same day he and he and Sandra brought their second daughter home from the hospital.  In an instant, everything changed.  They went from being a couple only a few years removed from both working at the White House to not knowing if Brian would live to see his 40th birthday.  An otherwise healthy former college athlete, Brian expected to find a system built to help him and Sandra deal with this new reality.  Instead, they found a broken and failed system in which doctors told patients to “get their affairs in order and get ready to die.”   In this episode,  we talk about what happened next which was to do what they do best, put hope into action.  In 2019 they founded and built a patient-led revolution called I AM ALS, which is now  a community of over 50,000.  Next they completed a documentary film, No Ordinary Campaign.  The film follows them in real time as they fight for their own future while seeking to build a brighter one for thousands of others.   Recently they started, Synapticure,  a  telemedicine health care company for people living with ALS.  We catch up on all that and talk about how they do all this while living with a terminal illness and raising two daughters 5 and 7.  Today, there is no cure for ALS.   There are no treatments available to save lives.  As Brian puts it, you have two choices in a situation like this: curl up into a ball or act.  Listen in and hear how Brian and Sandra chose to act.  Thanks for sharing with a friend and leaving a review to help others join our fight to end ALS.  Hugs, Lorri

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