Kevin’s Journal | Entry 6: One Global Community

This is my second episode from the 2023 ESPKU Conference. The first one featured interviews with 26 people affected by PKU from around the world. In this one, we'll spend some more time with 8 of those people. They include 5 adults with PKU, two parents, and one spouse. And they each have a different perspective to share about life with PKU.

The previous episode was meant for a general rare disease audience, as with my other episodes. But in this one, we'll also dig deeper into some issues that are specific to PKU. Still, if you live with another rare disease I hope you are able to extract some principles that will help you in your life.

My goal with these episodes has been to remind us all that PKU has no borders. We are one global community.

Resources

There are a few resources that I mention in this episode.

My PKU Life

This is the film that changed my life and opened my world up to a whole new reality... Life with my rare disease community. It's my story of living with PKU, at least for the first season of my life before PKU, newborn screening, and rare disease advocacy.

Never Give Up: A Rare Disease Podcast

This show is available on all podcast platforms, but I also post the episodes to my website. Some of the posts include behind-the-scenes reflections about that episode. The newer ones have transcripts available. I've been asked if the show can be translated, and that's not something I can do for logistical reasons. But, take the text from these episodes and have it translated. I believe these stories are universal, and I do not want language barriers to be the reason people can't access them. I just ask that you reference me as the author.

"Kevin's Journal | Entry 4: Finding Your Rare Disease Community"

The previous episode from the ESPKU conference featured 27 voices of people affected by PKU from around the world (26 interviewees plus myself). I do recommend listening to it first before this one.

For Katy

In 2013 I produced this film about a girl born with PKU who did not receive newborn screening. She was diagnosed at 13 months. It's a reminder of the importance of timely, accurate, and comprehensive newborn screening for every baby born in the world.

TEDx Talk: "The Empowering Role of Advocacy: A Parent's Perspective | Bernadette Sheehan Gilroy"

This incredible TED Talk by my friend Bernadette is a great introduction to PKU and rare disease advocacy from the parent's perspective. Watch this and you'll know why I'm incredibly honored to call Bernadette a friend.

Caffeinated Caregivers

Erica and Alyssa helped me rethink my views on caregiving. I'm not a parent, and I used to think that only parents or guardians were caregivers. But they helped me realize that advocacy is a form of caregiving. Advocacy is a huge part of my life, and their inclusive view helped me keep this important perspective—advocacy is about caring for people. Check out them out: @caffeinated_caregivers. And be sure to check out their podcast as well!

Once Upon A Gene

Connecting with Effie Parks and her amazing podcast Once Upon A Gene has helped me feel in my heart what I know to be true—I am part of a rare disease community that is much larger than I can imagine. And at the ESPKU conference, I mentioned something I've heard her say: "Community is a form of treatment." If you don't follow her, you definitely should.

Facebook: OnceUponAGene.podcast

Instagram: @onceuponagene.podcast

Sponsorship Message

This episode was made possible by my friends at Ajinomoto Cambrooke. They have been friends since the beginning of my PKU advocacy journey, and their support enabled me to capture some truly magical moments and stories. You heard some of those in the previous episode called Finding Your Rare Disease Community. I'll share more soon in a follow-up episode. Until then... I wrote an article recently about my experience with Cambrooke products. You can read that article here: Traveling with PKU Formula. If these episodes have meant something to you please reach out to Cambrooke on social media and let them know!

Facebook: AjinomotoCambrooke

Instagram: ajinomoto_cambrooke

About Never Give Up: A Rare Disease Podcast

This is a storytelling podcast. Normally, I don't interview guests or tell news that affects our community. Other podcasts do that extremely well. I did this time because I couldn't travel across the world and attend such an event without capturing as many perspectives as possible.

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

Instagram: @kevinalexander_pku

Facebook: @pkujournal

LinkedIn: Kevin Alexander

Email: kevinalexander@pkujournal.com