A Race Against Blindness | Dr Johnston and Bryan Ward | Ep. 247

NEW EPISODE RELEASED
Click the links below or in the show notes!
Welcome to a new episode of The Dad Up Podcast. I’m excited to share another episode with this guest to have a tough conversation about the struggles his son will soon face.
Dr. Steve Johnston is an MD/MBA with a vast understanding of the healthcare system, coupled with real-world experience in building companies, leading teams, & solving complex challenges.
His son, Luke, has a rare genetic condition and is slowly going blind.
Upon receiving the diagnosis that his son was going blind, nothing has been more important to Steve than championing the mission of A Race Against Blindness: support research & find a cure for retinitis pigmentosa caused by Bardet-Biedel Syndrome.
This rare disease known as Bardet-Biedl Syndrome (BBS) is one of many genetic conditions that can cause RP/blindness in young children.
His son, Luke, is actively going blind. Thus, the birth of A Race Against Blindness organization.
Steve & his wife, Kristina, founded the nonprofit called A Race Against Blindness.
But that really only scratches the surface in terms of their motivation.
Since learning of Luke’s diagnosis , Steve & Kristina have become strongly connected to the rare-diseases community.
While rare diseases are actually not unusual, with more than 7,000 diseases classified by the FDA as rare, each one individually often affects only a small number of people.
Thus many rare diseases don’t receive enough resources to fund research for treatments or possible cures.
Steve & Kristina are deeply dedicated to their mission, & their commitment is what will lead them to success.
If you would like to learn more about this story, or would like to donate to the cause, please see their website link below or in the show notes.
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Steve Johnston Instagram:
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Nonprofit Website:
A Race Against Blindness - Nonprofit funding sight-saving research
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