A Race Against Blindness. With Stephen Johnston

A Race Against Blindness with Stephen Johnston

It’s hard to imagine losing one sight, and even more heartbreaking to discover that your child is. My guest today is a father on a mission to find a cure not only for his child but all persons affected by the onset of blindness. 

What We Talked About

  • The Precursor of Bardet-Biedl Syndrome
  • How Steve’s parenting approach changed after his son’s diagnosis
  • Steve’s journey in creating a nonprofit organization, “A Race Against Blindness.”
  • The importance of mental toughness and perseverance
  • How Steve and his family found strength and resilience in the face of adversity

Things to Remember

“Tomorrow is not guaranteed. Anything can happen at any given time.”

“Everybody can make a difference. It doesn’t matter how many or how few resources anyone has. Everybody can make a difference.”

“Start doing things that might prepare your children for challenges.”

“Make sure you have a support network for you and the kids, and you’ll be able to get through whatever it is.”

“Challenges are coming for all of us at some point or another, and the more we prepare ourselves to face those head-on as they happen, the better off we are.”

― Stephen Johnston

Additional Resources

Retinitis Pigmentosa

Bardet-Biedl Syndrome

Help Fund a Clinical Trial to Cure Childhood Blindness

Let’s Continue the conversation…

Now, Stephen and I want to hear from you!

How far would you go to save your child’s vision? Listen in as Stephen Johnston shares his mission to fight blindness for his son and thousands of others.

Remember, The Art of Parenting was created for you. If you have any suggestions for experts, I should have on the show or parenting questions you want to be answered. Please let me know here.

More About My Guest

Stephen Johnston, MD, MBA, is a father, radiologist, non-profit founder, and Ironman athlete. When he found out his nine-year-old son, Luke, was going blind as a result of a rare disease, he founded A Race Against Blindness to fund sight-saving research for his son and thousands of others like him.

Though Stephen is relatively new to the nonprofit world, he’s a man on a mission to raise $1 Million for a clinical trial and taking on challenges like Ironman to raise money and be an example for his son. So far, they’ve raised over six figures, been featured on GoodMorningAmerica.com and the Dan Karaty if I’m Being Honest podcast, and had TV spots in multiple major markets.

Stephen lives outside of Phoenix and spends his spare time training for his next Ironman and traveling with his family to create lifelong sighted memories for Luke.

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