Tuesday Nov 07, 2023
Kevin’s Journal | Entry 5: In This Together
I'm still thinking about the 2023 ESPKU Conference and will be for quite some time. I gathered so many interviews that I had enough material for another long episode, but I'm still working on it. So, in the meantime, I wanted to share a brief episode with you... While at the conference, I spoke on one of the panels of PKU Adults. I spend a lot of my time advocating for all of the various perspectives within the PKU community but at the end of the day... I am someone living with PKU, and there are issues that matter to me on a personal level. So, here are some of my thoughts on issues affecting PKU adults.
And an important reminder that, even though we have different perspectives on this PKU or rare disease life, we are still all in this together.
Sponsorship Message
My experience at the 2023 ESPKU Conference 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.
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
Instagram: @kevinalexander_pku
Facebook: @pkujournal
LinkedIn: Kevin Alexander
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