poconnor, 20 days ago to random

Jogging with lettuce: a breakdown or something more sinister?

Residents were startled by the spectacle of a small wolf running next to a woman who was panting heavily & carrying an iceberg. 🥬

Inspired by her #PKU clan, the woman combined a daily dog walk with a return to running.

“The Allotment is a safe place & I needed to check on the plot. Lettuces were looking good & I fancied a salad for lunch.”

Authorities are seeking those who incited the incident.
#livingwithpku #jogging #NSPKU2024

soheb, 20 days ago to random

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?!?!?

#nspku #NSPKUConference #NSPKU2024 #nspkuconference2024

poconnor, 21 days ago to random

Hubby serves up a phe-free meal to finish my #NSPKU2024 weekend.

The All-In-One Aubergine, Tomato & Nigella Seed Curry from India express book

soheb, 21 days ago to random

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

#nspku #NSPKU2024 #NSPKUConference #nspkuconference2024

soheb, 21 days ago to random

Back home, and I can't believe I have to cook my own food again 😭😭😭😭

#NSPKU2024 #NSPKUConference #nspkuconference2024 #pku #phenylketonuria #pku

soheb, 21 days ago to random

I had a great weekend at the #NSPKU2024 conference, but my god I am absolutely shattered and exhausted. Doesn't help the car journey home had busted air con that needed regassing. 🤦‍♂️

And I still haven't found my garage keys...

poconnor, 21 days ago to random

Good morning @NSPKU Conference. Metabolic dietitian Suzanne Ford kicks us off with a look at the treasure trove of information on the NSPKU webpage.

the research page has open access to relevant studies, while the documents page is a rare resource of helpful information.

Plus, full page copies of the News & Views!

#livingwithpku #pku #NSKUConference #NSPKU2024 #raredisease #rarediseasecommunity #lowprotein

image/jpeg

poconnor, 21 days ago to random

Photos from #NSPKU2024 great day, which ended with a bunch of us chilling and shooting the breeze. Perfect.

image/jpeg
image/jpeg

soheb, 22 days ago to random

There was a great panel talk by @poconnor about living with PKU and sapropterin.

One of the questions was "are you doing well with phe levels", and one of the points was that how life changes do have a severe impact on phe levels.

As someone who moved house quite recently AND had a job change, I am proof that big life changes as well as changes to routine absolutely do mess up phe levels.

#pku #LivingWithPKU #ClassicalPKU #diet #lowProteinDiet #LowProtein #phenylketonuria #phenylcetonurie

poconnor, 22 days ago to random

Game on! Excited for the first talk. #LivingWithPKU #NSPKUConference #NSPKU2024

poconnor, 24 days ago to india

🇮🇳 Achievement unlocked. Just sold #LivingWithPKU in #India! 🥳 This book is now helping people in 13 countries.

Plus, if you are in the #UK, you can now buy direct via Shopify. This helps you with 10% off, and helps me with more support (££!)

Thanks all, looking forward to seeing some of you at the #NSPKUConference this weekend

#PKU #NSPKU2024 #RareDisease