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Parents As Rare - Series Archive (click photos to listen)
PARENTS AS RARE
Cowden Syndrome & Male Mental Health
David is a rare disease patient advocate, highlighting the importance of mental health, specifically for males. David and I discuss these things and more, including our collaborative top tips for rare parents piece from Rare Revolution Magazine.
Kristy Dickinson
Chronically Simple & Simply Unbreakable
Kristy is a wife & mother of three. While navigating life with multiple rare diseases, she founded Chronically Simple, a digital health app that empowers patients to own their healthcare. She also writes a blog & co-hosts the Simply Unbreakable podcast.
Nathan Peck
Parenting with VCP Disease
Nathan Peck is a husband, dad, VCP patient, CEO of Cure VCP Disease, & a good friend of mine. He navigates parenting as rare while bringing together patients, caregivers, researchers, pharma, non-profits & investors to cure VCP.
Emma & Spencer
The Heart of Parents As Rare
As a dad with a rare disease, I often think about the ways my children have been impacted. My children, 11 year old Emma and 5 year old Spencer, share their thoughts and feelings on this inaugural episode.
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.
Finding Parents As Rare - PAR
Parents As Rare is a series of MitoAction's Energy In Action podcast.
PAR episodes include numbers 33, 36, 39, 43, 46, 48, 52, 55, 57, 59, 62, 65 and the trailer.
You can find links to PAR episodes on this page by clicking the links in each photo above. You can also access MitoAction.org and select Energy In Action under Programs and Support, Education.
Episodes can also be found on your favorite podcast platform:
Spotify - search for Parents As Rare
Apple & Google Podcast - search for Energy In Action, and see episodes titled Parents As Rare
Being a podcast host is not something I had every really considered, until the idea was presented to me by a friend. Even then, I dismissed it quickly. Who would want to listen to me on any kind of regular basis? Well, I still think that's a valid question, but I do think there will be interest in hearing the perspective of my guests.
Thank you for listening, and a huge thank you to those who have joined me to discuss these important topics. I appreciate their openness and vulnerability, and all that they do to help others in the rare disease or chronic illness space. Please feel free to reach out with ideas, comments, or feedback. I'm always looking to improve, and I know I have plenty of room to do so.
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