#nspku — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #nspku, aggregated by home.social.
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🔬 The latest on PKU treatment from NSPKU's October conference - and what they might mean for those living with PKU.
💊 Sepiapterin (Sephience)
🧪 JNT-517, and MZE782
🩸 At-home phe monitors
🗓️ Published on PigPen.page (Want to be the first to see my posts? Subscribe for free emails.)
🔗 https://www.pigpen.page/whats-in-the-treatment-pipeline/
#PKU #Phenylketonuria #RareDisease #InheritedMetabolicDisorders #LivingWithPKU #NSPKU
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One Man. 10 Days. An epic challenge.
At 7am on 28 July, PKU dad Ian Spriggs will jog out of the car park at Southmead Hospital, Bristol and point his battered trainers north.
Ten days, 110-ish hours of foot‑time, and roughly 370 miles later, he hopes to trot through the doors of the Royal Victoria Infirmary, Newcastle, the hospital that has supported his daughter Molly since birth.
Please support Ian’s quest!
https://www.pigpen.page/bristol-to-newcastle-2025/ -
It begins: my first phone call from the surgery to confirm if I absolutely need my monthly #PKU medicine “only it’s a bit expensive”.
Apparently, they plan to call to check this with me every month.
Going to head this off at the pass by getting my Clinic to write them a letter, and send them the #NSPKU documents explaining pku to #GP surgeries 🤞🤞🤞
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I'm going to be sharing some photo album of the slides at the ESPKU event. This will be a thread! 🧵
These slides are all on Google Photos, but if you want the photos on another service (like Outlook or iCloud), let me know and I can try and get them shared.
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A new contender - Prekulab - have two new products:
LNAA series - you can have *up to* 80% normal food, and the rest is tablets/powder.
AA series - up to 20% normal food, 80% tablets powder.I believe the person said the LNAA total tablets amount is body weight in kg/2. For example, for me I’m 80kg, so I’d have 40 tablets a day.
Spread that across the day, it would probably be 10 tablets in the morning, 20 in the afternoon, and 10 in the evening. Interesting!
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IT’S COMING HOME!!
IT’S COMING!!
BLOOD TESTS COMING HOME, IT’S COMING!!
Now, these are prototypes, BUT!
* Result in 2 mins
* Records in app
* Results get sent automatically to doctorsYour move, post box 📮♟️
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Professor Anne Green did a talk on Sheila (and Mary Jones’) life story of PKU. The talk was great, but the book is phenomenal and I strongly encourage folks to buy it and read it.
Sheila: Unlocking the Treatment for PKU https://amzn.eu/d/3gLpZ1z
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If you are wondering “what is PKU?”, my good friend @poconnor has wrote a book on just that!!
It's called Living with PKU, and you can get it here: https://pigpen.page/books/ (£15 for paper back, £5 for eBook)
Between June and July, half of the profits go to the NSPKU charity (https://nspku.org) - a charity that does so much for PKU folks!
Please check out the book (and boost these posts)! Thank you!
#phenylketonuria #LivingWithPKU #nspku #books #bookstodon #boost #boostswelcome