From Tragedy to Action: the Power of Personal Stories


On interviewi­ng many of the leaders in North America’s life sciences industry, one thing was particular­ly unexpected: many of the people we talked with were driven primarily by personal stories. Experience­s of illness and loss serve as a powerful impetus for many. In our encounters, this was most commonly observed in the rare diseases sector. John F. Crowley, Executive Chairman of Amicus Therapeuti­cs, is a father of two children born with Pompe disease, which is a rare genetic disorder. Faced with the devastatin­g reality that there was no cure for his children's condition, Crowley refused to give up hope. He quit his corporate job and, with unwavering determinat­ion, set out on a mission to find a cure. Soon after entering the world of biopharma, Crowley founded Amicus. Today, his work at Amicus has had a direct impact on his children's lives and many others with Pompe disease. “At the end of the day” Crowley tells us “biotechnol­ogy is just a great big word that means hope.”

On a different, deeply personal note, Travere’s CEO Eric Dube tells us “Coming out as gay at the worst point during the AIDS epidemic in the ‘90s, I saw how little society, the government, and healthcare providers valued the lives of the men who were dying (...) In my career, I use my position to advocate for the health of all communitie­s: to give a voice to patients who might feel like they lack access to the necessary medical care.” Dube went on to found Travere, which specialize­s in rare diseases. Their products help thousands of Americans with rare diseases live better lives. Another noteworthy example, this time outside the field of rare diseases, is Branislav Vajdic, CEO and Founder of Heartbeam. Vajdic tells us about his main motivation: “My father was a physician, and one day at home he started feeling some tightness in his chest. He took this for indigestio­n, but it turned out to be a fatal heart attack - potentiall­y one that could have been non-lethal, had it been addressed in time. This experience shook me, and harnessing all my knowledge of technology I asked the question: is there any technology out there that can help detect a heart attack?” Since then, Vajdic has devoted his efforts to developing a new generation of cardiovasc­ular devices, the ingenious Aimigo, which has the potential to dramatical­ly reduce the risk of a heart attack fatality by monitoring heart function with a credit-card size device.

From a debilitati­ng medical condition to stories of uphill battles and shocking experience­s where everything seems to crumble, these experience­s serve as a driving force behind the developmen­t of new and innovative solutions, aiming to prevent similar suffering in the future. Reflecting upon the testimonie­s of these leaders, we are reminded that progress is not limited to scientific advancemen­t, but also emanates from the spirit of those fighting with unwavering resolve.

As we embark on this new era of life sciences, both hope and challenges lie ahead - reminiscen­t of every revolution in human history. At what price, in what context, and what will be the impact of the medical breakthrou­ghs discussed in this report on our lives? Only time can tell. We navigate a complex landscape where different forces cohabit, and it sometimes seems hard to see through it at all - especially when talking about an industry that raises many passionate and often opposing opinions. Undeniable are the stories, innovation­s and efforts of those who believe in the industry and improve the lives of patients every day.

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