🔬 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
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 🤞🤞🤞
NSPKU - Phenylketonuria Future Potential Therapies
https://videos.pkutalk.com/videos/watch/e7786e17-a9c4-4bce-859f-7f22cad8e9cc
As much as I loved the NSPKU conference, I'm happy to be back home with a toaster that toasts toast to my standards.
The one at the conference looks like it would toast bread to a crisp, but then it was just lightly cooked?!?!?
Here are some of the photo albums of the NSPKU conference 2024:
https://photos.app.goo.gl/g5jCVEKoUFAFAxv96 - what's in the pipeline
https://photos.app.goo.gl/DtCGiA39D1sQuqyB8 - mRNA therapy treatment
https://photos.app.goo.gl/bwgCwNRpxd5xk2Ls9 - European Guidelines
https://photos.app.goo.gl/ZbdW5YbXuYgKDZNT9 - NSPKU Campaign 2024
It hasn't quite hit me that I'll be going to the NSPKU conference this Friday...
To all my PKU folks in the UK - the NSPKU has a *great* section on foods that are suitable for PKU folks as well as the relevant exchanges.
Please check those docs here: https://nspku.org/documents/?wpdmc=dietary-info
One of the benefits of having a new house is that I get to register with the NSPKU charity all over again! 🥰
#NSPKU #charity #movingHouse #house #pku #phenylketonuria #phenylcetonurie
poconnor
Soheb
Soheb
