Telemedicine and You: Building Proactive, Personalized Care for all People with ALS

We are excited to host EverythingALS Community Event: 
Telemedicine and You: Building Proactive, Personalized Care for all People with ALS.
–     Brian Wallach, Founder of Synapticure
–     Brook Croke, MPH, Certified genetics counselor in the Department of Pediatrics at SIU School  of  Medicine
–     Danielle Geraldi Samara , MD , Neurologist
–     Dr. Eric Anderson , Physician-scientist

In 2017, we were in our 30’s, living in Chicago, working our dream jobs and raising our two year old daughter while expecting our second baby. On the day we brought our second daughter home from the hospital, I was told I had ALS by a general neurologist and he told me I had six months to live. The appointment lasted all of ten minutes. Over the next several months, we saw six different ALS specialists in a desperate attempt to find out if he was wrong. With each new specialist, we ended up having to repeat the same test over and over again. We had to fight for basic testing, including genetic testing and were left on our own to research every clinical trial and therapy as these clinicians were often unaware of them.  In 2019, we launched I AM ALS, a patient-centric, patient-led nonprofit dedicated to rewriting the ALS story, which has grown to a community of over 50,000. Through I AM ALS, we met countless patients who told the same story about their diagnosis and care journey. This same patient-centric spirit of change and empowerment animates everything we do at Synapticure. ALS care today is hard. It should not be. It should be easy and accessible to everyone. It is time to leave behind the era of “I’m sorry but we can’t help you.”