Grief and hope. Courage and vulnerability. Becoming findable and maintaining privacy. Rare disease is full of paradoxes, as guest Adam Johnson explains. 

A man of remarkable fortitude and resilience, Adam faced a Mito diagnosis that led him to abandon a career he loved in education to become a dadvocate for mitochondrial disease. Adam’s resilience bloomed from his experiences with the disease; he knew staying silent was not an option if he could find connections and prevent others from enduring unnecessary periods of uncertainty, desperation, and loneliness. He ventured into unknown territory; creating a supportive community on social media, a platform through his website and blog, and even running a support group for fellow fathers in the Mito community.

This isn't the end of you. It's just moved and evolved to this point where I'm a little more comfortable in this skin that I have now. - Adam Johnson

In this episode, you'll learn:

• Why it's worth putting yourself out there and becoming findable
• How a diagnosis is not the end of you
• Why there's no right or wrong way to proceed
• How you might be helping someone you don't even know
• How to make a difference even if you're still in Middle School
• And so much more...

Learn More:

Adam's Website
Twitter
Instagram
Linked In
Emma's fundraising site
Adam's Parents As Rare series on MitoAction’s Energy In Action podcast:
MitoAction
Dalia's Wish
Megan Devine

Rate, Review, & Follow on Apple Podcasts

"This is my go-to podcast for inspiration and to discover new approaches to embrace the challenges in my life." If that sounds like you, please consider rating and reviewing my show! This helps me reach more people -- just like you -- find strategies and insights to do the things that feel undoable. Click here, scroll to the bottom, tap to rate with five stars, and select “Write a Review.” Then be sure to let me know what you loved most about the episode!

Also, if you haven’t done so already, follow the podcast. Follow now!

Sign up for my newsletter and learn more about these remarkable stories at www.jessicafeinstories.com

Order Jessica's memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes

Watch Jessica's TedX Talk

Music credit: Limitless by Bells