October 2026
October is a massive month in the PKU world, with EU and UK conferences. Meanwhile, I'm heading to Japan! Plus audiobook, 'fish' fingers & more
PKU news
Low Phe Series discontinued
I have pulled my series of kid’s books. See below for more information, and if you have any concerns, please contact me.
UK and EU conferences
October is a massive month in the PKU world as the ESPKU conference is held in Denmark, and then the UK conference will get underway in Northern Ireland. I would love to hear about the event from anyone attending. I won’t be able to make either event as I’m in …
Japan, baby!
Very excited about my third trip to the land of the rising sun. I was previously on planned tours, so food was mostly taken care of (including a 5-course meal prepared entirely for me and matched with sake!). This time I will be striking out on my own and navigating the food scene with my parents. I hope to update you all in November. Meanwhile, I will be going back to my tips on travelling with PKU.
Pauline
Brain news
ABI Action plan UK
The publication of the ABI Action plan for the UK, originally promised in June, was delayed again over the summer. UKABIF (UK Acquired Brain Injury forum) remain on the case and, after meeting Ministers at the Labour Party conference, are hopeful of an update in October.
AI brain surgery first
I missed this over the summer: The brain surgery with ‘Live AI Assistance’ took place in the UK. During the surgery, an AI tool analysed a video and assisted the removal of a tumour. Link: BBC News
Rugby suit to continue
The legal action involving hundreds of claimants has been allowed to continue in the UK. The case against World Rugby involves professional players arguing that there was a breach of duty over player care. Link: Guardian UK
PigPen news & recipes
Low Phe series
I created the Low Phe Series to give PKU kids a book full of foods they could learn about and eat without worry. Since then, I've realised that the protein and Phe values for figs and tomatoes (two of the foods in the book) vary depending on whether the fruits are fresh or dried.
A series like this must be reliable, so I've withdrawn it rather than risk anyone's protein allowances. This wasn't a fun decision, but it was a straightforward one: safety comes first. As ever: food composition data changes and varies between sources, so always check changes with your dietitian.
Thank you to everyone who bought a copy. Your support meant, and means, the world. If you have any concerns, please do contact me.
YouTube: The mechanism of PKU
My third video reading from my Living with PKU book is up on my YouTube channel. This is new for me, I think you can hear the levers in my voice! Hopefully, it is helpful, and do let me know your thoughts!
Audiobook: The Red Hat Stories
I would love to have the money (£700-1000!) to produce a fully human audiobook. One day, perhaps. Until then, I am testing the waters on Apple Books Audio with an AI version of my London-based short story collection. It is my first tentative experiment with AI narration, and I appreciate any feedback,
Pauline O’Connor
Recipe: PKU “Fish” fingers
After another supermarket product seems to have been discontinued, I went back to my “fish” fingers recipe and trialled it with the Taranis fish substitute. It worked well, and you can find the updated recipe here:
Pauline
Spread the word
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Cheers,
Pauline
