Trailer – Parents as Rare

</p><p>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 <span class="glossary-tooltip glossary-term-71403" tabindex="0"><span class="glossary-link"><span class="glossary-underline">mitochondrial</span></span><span class="hidden glossary-tooltip-content clearfix"><span class="glossary-tooltip-text">Related to the mitochondria.</span></span></span> 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.</p></div><footer class="entry-footer"></footer></article></main></div></div> <div class="above-footer-widgets"> <div class="wrap"> <div class="upcoming-events"> <div class="above-footer-widgets-header"> <div class="above-footer-widgets-title"><h2>Upcoming Events</h2></div> <div class="above-footer-widgets-button"><a href="https://www.mitoaction.org/calendar/" alt="Upcoming Events" title="Upcoming Events" class="button" >View All</a></div> </div> <div class="above-footer-widgets-content"> <div class="tribe-compatibility-container tribe-theme-genesis" > <div class="tribe-common tribe-events tribe-events-view tribe-events-view--widget-events-list tribe-events-widget" data-js="tribe-events-view" data-view-rest-url="https://www.mitoaction.org/wp-json/tribe/views/v2/html" data-view-manage-url="1" 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