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Trailer – Parents as Rare

 

I am Adam Johnson, a dad and rare disease patient advocate, a self-proclaimed Dadvocate. From the onset of symptoms and after the diagnosis of a progressive mitochondrial disease with no treatment or cures, the isolation was almost as excruciating as the symptoms. I felt alone in so many ways, but in particular as a parent. I knew I couldn’t be the only person with a rare disease who was trying to raise children, but it felt like I was. Without the community I was seeking, I decided to build it myself. Living life as a parent with a rare disease can be paradoxical. We laugh and cry, we’re vulnerable and scared, we’re brave and afraid- all at the same time. Parents As Rare, a series brought to you by the Energy In Action podcast, is a community where parents who have a rare disease or chronic illness can connect, share, support and be supported.

 

CONNECT WITH MITO ACTION

Website

https://www.mitoaction.org/

Facebook

https://www.facebook.com/mitoaction

Twitter

https://twitter.com/mitoaction

Instagram

https://www.instagram.com/mitoaction/

LinkedIn

https://www.linkedin.com/company/mitoaction

Date: 09/29/2021
Speaker: Adam Johnson
Listen Now: Click Here

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