Tofersen Can Give Lisa Stockman Mauriello More Time to Live
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I am Lisa Stockman Mauriello, a wife and mother of three beautiful sons, and I am fighting for my life and asking for your help. I've spent my 30-year career in the field of pharmaceutical healthcare communications, and now, ironically, I am fighting to get access to a medicine designed to give people like me more time with their families. Every week, I am rapidly declining from bulbar ALS which is caused by a mutation to my SOD1 gene. The pharmaceutical company, Biogen, has a late-stage medicine called Tofersen, which is designed to treat people with this mutation. Unfortunately, they have denied my request, through my physician, to gain access for reasons that have not been explained to us.
My physician is one of the physicians participating in the trials for Tofersen, and he believes the drug may give me more time. And that is all I am asking for: time. My physician says that he has never seen an ALS case progress as rapidly as mine. I'm losing function every week -- but it is not too late -- and getting access now can extend my life.
My three sons and my husband, Bob, are my life. My goals are modest and, I believe, realistic. I want to survive long enough to be here for three milestones: to see my oldest son, Scott, graduate from college in May, my youngest, Dean, graduate from the 8th grade, and my middle son, Luke leave for college in September. We believe Tofersen gives us that hope.
Recently, I was able to travel to UNC (my own alma mater) to visit Scott. While there, we set up a ballroom to do a mother/son dance. I did a first dance with all three of my boys. I wish I could’ve frozen time in those moments, but at least they’ll always have those memories. I am begging Michel Vounatsos, Biogen's CEO, to give me the chance for more memories. Please grant me the Right to Try Tofersen. #tofersen4lisa
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