Steve Johnston (A Race Against Blindness)

The See-Through Podcast

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Episode 098 | Steve Johnston (A Race Against Blindness) joins the podcast! In this episode, Steve chats with Lance about his non-profit "A Race Against Blindness" which is an organization dedicated to finding a cure for the rare eye disease Retintis Pigmentosa (RP) caused by Bardet-Biedl Syndrome (BBS). Steve's son, Luke, has been diagnosed with BBS and is expected to become legally blind in his teenage years - if a cure is not available.

Lance and Steve also explore the intricacies of advocating for a cure while simultaneously learning to accept blindness, how to be a supportive parent to a child with a disability, the lack of resources for rare disease research, and more!

SEE-THROUGH is hosted by Lance Johnson. Based in New York City, Lance is a video editor living with an incurable eye condition called retinitis pigmentosa (or RP for short). In most cases, RP causes legal-blindness by the age of 40. Now 33, Lance uses SEE-THROUGH as a platform to explore his inevitable future of blindness through his transparent conversations with his guests.

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STEVE JOHNSTON LINKS:

A Race Against Blindness: https://araceagainstblindness.org/

Instagram: https://www.instagram.com/dad.vs.blindness/

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