Season 1 Ep. 1 | Regaining Hope: My Journey to Rare Disease Advocacy

My journey to rare disease advocacy began with my career in TV photojournalism. In this first episode of Season 1, I share my story of working in the field as a TV photojournalist, losing hope after witnessing the unimaginable, and regaining hope once I discovered the power of PKU, newborn screening, and rare disease advocacy.
In life, we all have our moments when hope feels lost, when the weight of the world seems to bear down on us.
My story is about those moments and how I found my way back. It's about the rare disease experience and how it can affect our mental health. But it's also about community and the power of reaching out. Join me on this journey of resilience, and let's discover together how to find hope again.
Resources
Here are a few resources related to this episode:
Regaining Hope: My Mental Health Story (pkujournal.com...) : This story was building for 20 years. I first shared it as an article on my blog last year. Here is that original article.
My PKU Life (pkujournal.com...) : I mentioned this short film in the episode. This is the film that began my journey into PKU, newborn screening, and rare disease advocacy. I cannot overstate how much it changed my life. It opened up a whole new world, and I am forever grateful. If you’ve never seen it, here it is.
The National PKU Alliance (www.npkua.org) : I mention this organization a few times in the episode. It’s the non-profit that I’ve volunteered for and been associated with since the beginning of my advocacy journey.
Post-Traumatic Stress Disorder (PTSD) (www.mayoclinic...) : I mention PTSD in this episode. I share some details in service of the larger story, but I don’t go into exhaustive detail. Here’s some more information about it. It’s not something that only affects veterans or first responders. Anyone can experience PTSD, because anyone can suffer trauma.
Breaking News, Breaking Down (vimeo.com/4111...) : This documentary produced by journalist Mike Walter opened my eyes to the reality of journalists suffering from PTSD. If you’re in journalism, I encourage you to take the time to watch this film.
The DART Center for Journalism & Trauma (dartcenter.org/) : An essential resource for journalists who cover trauma. From their website: “The Dart Center for Journalism and Trauma, a project of the Columbia University Graduate School of Journalism, is dedicated to informed, innovative and ethical news reporting on violence, conflict and tragedy.”
Covering Trauma: Impact on Journalists (dartcenter.org...) : This article on the DART Center website explains the toll that covering trauma can have on the human telling the story. If you listened to the episode and think that the idea of journalists experiencing PTSD is overstated, please read this article with an open mind.
About Never Give Up: A Rare Disease Podcast
This is a storytelling podcast. I'm not interviewing guests or telling news that affects our community. Other podcasts do that extremely well. I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up.
Contact Kevin Alexander
Website: PKUJournal.com (pkujournal.com/)
Instagram: @kevinalexander_pku ( / kevinalexander_pku )
Facebook: @pkujournal ( / pkujournal )
Email: [e-mail] (mailto:[e-mail])