This is going to be a great discussion. I can’t wait to chat with these creatives and learn more about how and why they pursue their art. Looking forward to it!
13.05.2025 20:08
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This is going to be a great discussion. I can’t wait to chat with these creatives and learn more about how and why they pursue their art. Looking forward to it!
What kind of world are we building? My generation was saved through universal newborn screening. Will the next?
This article is a reflection on a recent decision affecting newborn screening policy in the United States.
“Newborn Screening Is A Human Right”: pkujournal.com/newborn-scre...
First off, that’s a great quote by Nietzsche. Something I think of often because of my life experience, both in the past and over the last year.
Second… I am slowly learning what it means to put more emphasis on the kind of person I want to be rather than what I do. It’s liberating.
Today my new book is out in print + an interview up on YouTube - When the Baby Is Not OK: Hopes & Genes - a memoir of pregnancy, birth + parenting as a geneticist with a rare inherited condition in the family -> www.youtube.com/watch?v=uF2H... #PKU #Booksky #Raredisease #Booklaunch #PCU
Due to a recent death in the family, I am suspending all advocacy activities. I wish everyone a happy and successful month of rare disease advocacy and especially a productive Rare Disease Day.
But due to these unforeseen circumstances, I am signing off for an extended period of time.
It used to be about building communities. Now it’s entertainment for the masses. Maximum views per piece of “content”. Not fostering genuine human connection with a niche audience.
That will always be my approach, no matter what the metrics say.
I share the same frustrations with Meta.
Time to rebuild a media ecosystem that rewards independent voices… Not punish them because the algorithm has a different agenda.
I have the same problem with Meta. I’ve built an audience over the years but struggle to reach them anymore because of the algorithm.
Whether I’m sharing a blog article or podcast episode, it’s the same… Meta wants you to stay on the platform. And that makes it hard to share anything of depth
Vulnerability is rough. Just because I talk about it or practice it doesn’t mean I enjoy it. Opening up is hard. Some will encourage you. Others will criticize or even exploit you. But it’s worth the risk. You learn who has your back. And when someone shows you who they are… Pay attention.
You don't want to miss an interview with Florentina! Set a reminder and don't miss the premiere! #pkulifestories #adultpkuawareness
“Never out of the fight.”
It’s about maintaining a healthy balance between life and advocacy…
The fight isn’t about what we do, but who we are becoming.
You are a human being. Not a machine.
pkujournal.com/never-out-of...
Today I put my newest book info up on my indie author site - When the Baby Is Not OK: Hopes & Genes. Releasing Feb 5th in hardcover, Feb 11th as paperback + ebooks. 2.5 yrs in the making, a #memoir that couldn't wait any longer to happen. jjbrownauthor.com/books/ #Booksky #Writingcommunity
And… @aphl.org for their information about newborn screening. They’ve been a great advocacy partner all these years.
Thank you! All of my podcast episodes are on the site. Since it’s a scripted show, I wanted to make it accessible to anyone, whether they listen to podcasts or not.
And I need to credit Patricia Guthrie for her help. Her insights into her dad as a person, not just a scientist, were invaluable.
Overhauled my website recently. PKUJournal.com. Reorganized the categories, made it easier to find articles. Well structured around PKU, newborn screening, rare disease, and mental health.
New article coming Saturday AM. Sharing a bit of what happened last year and what I plan to do going forward.
I reluctantly keep Meta to reach my audience. But have a feeling it’s going to get much, much worse over there. I loved what Twitter used to be, and hope to find that here!
Just joined around here. And I miss the days of making genuine connections with others and simple text posts. Always happy to connect with others in the PKU community. So if you’re around, I’m always down for a good chat!
Super helpful. Just joined and happy to connect over here!
Just joined and happy to connect over here! Thank you for everything you do!