Raise the Line - A Reservoir of Hope Drives Research Into a Rare Brain Disorder - Scott Reich, Co-Founder of Believe in a Cure

A Reservoir of Hope Drives Research Into a Rare Brain Disorder - Scott Reich, Co-Founder of Believe in a Cure

12/15/22 • 35 min

“There's a reservoir of hope, energy and optimism many of us have that we may not know about until we're really tested,” says attorney and author Scott Reich. The heavy test he and his wife Ilissa have endured for the past three years started when their infant son Eli was diagnosed with a rare brain disorder called FOXG1 Syndrome which causes severe seizures and impedes normal movement, speech and sleep, among other problems. Scott vividly recalls the moment when Eli’s doctor explained there was no hope for treatments or a cure. “I just felt an instantaneous gravitational pull that despite the intense emotion that overtook us in the doctor's office, we were going to do something about it.” That “something” includes starting the nonprofit foundation Believe in a Cure which is currently funding over fifty research and development projects worldwide focused on this pernicious disorder. Join us for this enlightening conversation with host Shiv Gaglani to learn about the multi-pronged strategy scientists are pursuing to overcome the mutation in this so-called master gene, the promising results emerging from preclinical programs and the supportive global community Believe in a Cure has helped create for the hundreds of other families fighting the same battle.

Mentioned in this episode: https://www.webelieveinacure.org

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Mentioned in this episode: https://www.webelieveinacure.org

If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/raisethelinepodcast

Previous Episode

A Hypothesis-Agnostic Approach to Accelerating Drug Discovery - Dr. Chris Gibson, Co-Founder and CEO of Recursion

“I’m currently sitting 100 feet away from a giant lab full of robots where we can do up to 2.2 million experiments a week,” says Dr. Chris Gibson, the Co-Founder and CEO of Recursion, a company whose mission is to create a more efficient path to drug discovery. You are going to hear a lot of mind-boggling numbers from Chris in today’s Raise the Line episode, but they all boil down to this: advances in genetics, computing, artificial intelligence, mRNA capability and other technologies are all converging to accelerate the testing of drugs at an incredible pace. This is particularly good news for people with rare diseases who are often in a race against time for development of therapies. Although only founded nine years ago, Recursion already has four programs in clinical trials. A key factor in this success is a bold departure from the traditional hypothesis-based approach to science driven by lab failures Chris experienced while earning his MD-PhD. Once he and his colleagues cast aside their bias about what was driving the disease in question, they achieved success in animal testing. “We just modeled the genetic loss of function because we knew that incontrovertibly to be true, and then asked the cells what was actually driving the disease and what could make it better.” Don’t miss this fascinating look at reengineering drug discovery through gene mapping, training neural networks and other leading-edge technology.

Mentioned in this episode: https://www.recursion.com/

If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/raisethelinepodcast

Next Episode

Navigating Change in the U.S. Healthcare System - Susan Dentzer, President & CEO of America’s Physician Groups

We welcome one of the nation's most respected health and health policy thought leaders to Raise the Line on this episode. Susan Dentzer’s remarkable career includes many years of reporting on healthcare for major national news outlets, being a senior policy adviser to the Robert Wood Johnson Foundation and serving as a board leader in medical education and health system delivery, just to name a few of her contributions. Earlier this year, Ms. Dentzer was appointed president and CEO of America's Physician Groups, an organization representing more than 350 physician groups providing coordinated, value-based healthcare for more than ninety million patients nationwide. She's also currently board chair of Research America, which advocates on behalf of biomedical and health-related research and innovation. Tune in to this elucidating discussion with host Shiv Gaglani that delves into what the pandemic revealed about value-based care and virtual care; what is helping to lessen clinician burnout; surprising views among medical students on the use of tech in healthcare; what is at the root of the public’s mistrust of science, and much more. “The reality of healthcare is very complicated. What I would make a plea for is that we all try to engage in developing a greater understanding of the issues, as opposed to seeing them through a narrow lens.”

Mentioned in this episode:
https://www.apg.org/
https://www.researchamerica.org/

If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/raisethelinepodcast