poconnor

soheb, 17 days ago to random

For folks who have used PKU Calculator - I've been thinking about winding down the diet management side of the app for quite some time now, as well as winding down iOS and Android apps.

I'm super proud of said apps, but the truth of the matter is that these apps do take a long time out of my life to maintain. If I had a team of developers and testers, then this would be easy. That, and Apple/Google bureaucracy has killed the fun for me.

#PKUCalculator #pku #phenylketonuria #phenylalanine

poconnor, 16 days ago to random

Update on future #treatments for #PKU

From the NSPKU conference held May 2024 here are my notes from the sessions on #sepiapterin, #mRNA, #gene #therapy, solute carrier 6, and oral options for #PegPal / #Palynziq

https://buff.ly/4awqcJP

#LivingWithPKU #RareDisease #phenylketonuria #PCU

soheb, 17 days ago to random

So it looks like duckduckgo isn't working...

#duckduckgo #search

soheb, 19 days ago to random

A little update on the garage key drama: just had a locksmith come over and replace the locks.

So long, old garage keyset!

soheb, 19 days ago to random

No hedgehogs last night, but these two jokers tried to raid the vault and got nowhere.

#hedgehog #hedgehogsofmastodon #hedgehogwatch #cats #catsofmastodon #catsoffediverse

soheb, 19 days ago to random

To all my PKU friends, please give a warm welcome to @Thejodiofitall!

Just recently joined PKU Talk now, I'm sure you'll make them feel welcome!

pcublogue, 20 days ago to Health

It’s important to not overeat and looking at calories is a way to achieve that.

But when I take a look at the total amount of calories of just the PKU formulas, it’s a meal. (550 calories). 😒

The only way I found dealing with that is intermittent fasting (time restricted window), eating only 2 meals of food and carefully spread formulas during the day.

#Health #phenylketonuria #phenylcetonurie #pku #LivingWithPKU

ClairTheGinger, 20 days ago to random

One thing I always get stuck on when eating with #PKU is remembering to eat and remembering what I actually have in my cupboards!

So I have my fruit and snack bowls, all filled either prescription snacks, less than half a gram or completely protein free snacks, so I'm less likely to go for the snacks that are more interesting but heavier in protein (yoghurt, crisps etc)

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, 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

poconnor, 20 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

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

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poconnor, 21 days ago to random

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

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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

soheb, 26 days ago to random

It hasn't quite hit me that I'll be going to the NSPKU conference this Friday...

#NSPKU #PKU #phenylketonuria

poconnor, 29 days ago to uk

The #aurora seen from Hertfordshire, #UK at 23:30 10th May 2024

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soheb, 1 month ago to books

I forgot to mention I got my kobo ebook reader today!!

See if you can spot any interesting books! Also, please feel free to recommend me some! I have read in ages so I’m trying to find my groove when it comes to reading books!

#book #books #bookstodon #kobo #ebookreader #ebook

pcublogue, 1 month ago to random

Hey everyone!
I need help for a short test. I've been told by one person that the articles take forever to load (2+ min) which I find odd since it takes me half a second to load them
Could you try to open 2-3 and let me know if everything is fast?
Thank you! 🙏🏻
https://phenylcetonurie.ca/

poconnor, 1 month ago to shortstory

Last Chance! The Red Hat Stories Kickstarter ends tomorrow. Fully funded, so it will be published.
Grab your copy @ Kickstarter .com & search ‘the red hat stories’

#theredhatstories #shortstory #anthology #shortstorywriter #kickstarter #newbook #bookstagram #author #London #londonlife #londoncity #london🇬🇧 #londonlove

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poconnor, 1 month ago to writing

May newsletter from PigPen 🐷🖋️ #writing, #PKU, & #BrainInjury

🚨 #Prescription costs in England & Wales go up!

📣 NSPKU conference & #PKUAwareness month

🧑‍🔬 Help with #TBI research

🥳 🥳 #TheRedHatStories funded! Last chance to join us in the #Kickstarter which closes on #StarWarsDay #MayTheFourthBeWithYou

https://buff.ly/3Wp8jJM

soheb, 1 month ago (edited 1 month ago) to Youtube

In PKU news, a good friend of mine Paul has updated his PKU Insights YouTube channel to discuss some of the new things in the future.

You can check it out here (and subscribe to the YouTuvbe channel!)

https://www.youtube.com/watch?v=iMPr16eAuGo

#PKU #PKUInsights #YouTube #phenylkeotnuria #phenylcetonurie #lowProtein #LivingWithPKU

poconnor, 1 month ago to random

When every month is #pkuawarenessmonth … 🥳

#PKU #LivingWithPKU #LowProtein

https://www.instagram.com/reel/C6betLNoKnm/?igsh=YjBta3IydnhiMzE3

poconnor, 1 month ago to 13thFloor

The second proof of #TheRedHatStories arrived just in time for #WorldBookDay!

This is my first #fiction work, an anthology of #shortstories set on #London transport. The #NewBook is looking great, nearly ready for the #Kickstarter backers.

Am especially proud of the dedication to my wonderful writing teacher.

There is still time to back the book. Go to Kickstarter .com and search "Red Hat Stories".

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