40 min
Love Can Move Mountains - with Heather Hay and Jena & Phil Huber Making Our Way
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- Mental Health
In our last episode, Nate Plasman shared his story about his little boy’s diagnosis with a rare disease and the battle to get him into a clinical trial. Today, we’re looking at what can happen once that drug is approved by the FDA and doctors can begin to prescribe it.
I’m talking to 2 families who live on opposite sides of the country, but were brought together in the fight of their lives. For so many of us facing the unimaginable – a loved one battling an illness or disease for which there is no cure – it seems that an approved treatment could be the answer. But oftentimes, that approval is the beginning of another heart-wrenching fight. The fight for access to that treatment.
Our story today focuses on the June 2023 FDA approval of Elevidys – the first approved gene therapy for 4 and 5 year olds with Duchenne muscular dystrophy. Heather Hay, and Phil and Jena Huber share their families’ experiences, their deep commitment to helping other children get access to a treatment, and their fierce belief that a community can drive change.
This is the individual and unique experience of these 2 families and our focus is not so much on the treatment itself as it is on what families go through and how love can move mountains.
In our last episode, Nate Plasman shared his story about his little boy’s diagnosis with a rare disease and the battle to get him into a clinical trial. Today, we’re looking at what can happen once that drug is approved by the FDA and doctors can begin to prescribe it.
I’m talking to 2 families who live on opposite sides of the country, but were brought together in the fight of their lives. For so many of us facing the unimaginable – a loved one battling an illness or disease for which there is no cure – it seems that an approved treatment could be the answer. But oftentimes, that approval is the beginning of another heart-wrenching fight. The fight for access to that treatment.
Our story today focuses on the June 2023 FDA approval of Elevidys – the first approved gene therapy for 4 and 5 year olds with Duchenne muscular dystrophy. Heather Hay, and Phil and Jena Huber share their families’ experiences, their deep commitment to helping other children get access to a treatment, and their fierce belief that a community can drive change.
This is the individual and unique experience of these 2 families and our focus is not so much on the treatment itself as it is on what families go through and how love can move mountains.
40 min