The PKU community is one global community. That’s something I feel very deeply after the 2023 ESPKU Conference. This final episode from the conference features conversations with 8 people in our community from around the world.
This episode is sponsored by Ajinomoto Cambrooke and was produced after my trip to the 2023 European Society for PKU and Allied Disorders Treated as Phenylketonuria (ESPKU) Conference in Birmingham, UK. Cambrooke’s founders, Lynn and David Paolella, have been friends since the beginning of my PKU advocacy journey and I told part of that story in a previous sponsored article. I don’t typically seek sponsorships in my work. It has to be a product or service that I believe in and use myself. But I have been using Cambrooke formulas (I prefer to call them medical drinks, but I recognize that many still use the term “formula” so I’ll use it in this post) since 2012 and was honored to partner with them to bring you content from the 2023 ESPKU Conference.
One Global Community – A Vision for the PKU Community
Today I’m sharing the final episode produced at the 2023 ESPKU Conference. This one is different from the previous episode: Finding Your Rare Disease Community.
While at the conference I interviewed 26 people affected by PKU. I included them all in that previous episode. But this one features just 8 people, which means we’ll spend more time with each of them.
These are people from various places in the world, all living with PKU in some way: five are PKU adults, two are parents, one is a spouse of a PKU adult. Again, I use the term “living with PKU” inclusively because we are all affected by it and live with the daily grind of this rare disease.
But… I did make an effort to interview as many PKU adults as possible. Because the best way to understand what it’s like to live fully with this rare disease is to hear from those who have it.
And as I wrap up this season of my life—of experiencing profound change myself at this conference—I’ll share a brief story with you that I hope communicates how I feel about our community.
“Earthrise”
I’m a nerd when it comes to the US Space Program.
One of my earliest memories is seeing the Space Shuttle Enterprise at the 1984 World’s Fair in New Orleans. In 1986 I was watching live when Space Shuttle Challenger exploded. And then, in 2003, I was a TV photojournalist when Space Shuttle Columbia broke apart during reentry over our viewing area, and covered the story that day (I wrote about that experience in an article on this blog earlier this year).
My lifelong fascination with the Space Shuttle Program led to an interest in the early days of NASA. Project Mercury. Project Gemini. And, of course, the Apollo Program that took us to the moon.
While Neil Armstrong and Buzz Aldrin were the first humans to set foot on the moon, the first voyage to the moon wasn’t during the Apollo 11 mission in 1969.
That was the mission of Apollo 8 in 1968. Astronauts Frank Borman, Bill Anders, and Jim Lovell weren’t just the first humans to see the moon up close.
They were the first to see the Earth from the moon.
And they captured the image above called “Earthrise”.
As they stared at the Earth while in orbit around the moon… Over 200,000 miles away from everything they knew… They had a profound sense of our shared humanity.
A strong connection to the idea of one global community.
PKU Has No Borders
That vision of one global community—a deep, profound emotional connection to other humans—that’s the way I feel about the PKU community.
We have shared, lived experience that only those in our community understand. And, for me, that creates a strong emotional connection with others in our community.
Because when I travel to events and look people in the eyes… Hear their voices… Shake their hands… Give them a hug…
I realize that I am not alone.
None of us are.
We have each other.
I wrote something in my journal while I was at the ESPKU conference and it’s something I’m going to repeat often. Because it is a realization deep in my heart.
PKU has no borders. We are one global community.
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