TGIF - pizza night for my kids including our youngest with PKU low protein diet. Margherita pizza, no protein: Mevalia low protein pizza base, Violife Mozzarella flavour topping, Tesco pizza sauce.:chefkiss: #PKU #Phenylketonuria #LowProtein #LowProteinDiet #PKUparenting #TGIF #PizzaNight #Pizza #Mastodaoine

New #openaccess publication #SciPost #Physics

On higher-dimensional Carrollian and Galilean conformal field theories

Bin Chen, Reiko Liu, Yu-fan Zheng
SciPost Phys. 14, 088 (2023)
https://scipost.org/SciPostPhys.14.5.088

#PKU
#CollaborativeInnovationCenterofQuantumMatter #NSFC

To all who celebrate, Easter greetings, especially to those today who have (or have kids with) medical dietary restrictions on chocolate.💛🐣☀️🌺 #PKU #LivingWithPKU #PKUparenting #EasterSunday2023 #EasterSunday #EasterEgg #chocolate #AnCháisc

I somehow missed Rare Disease Day yesterday, 28th February, which is a bit of a faux pas for a carrier of a rare disease gene (Classic PKU) and a dad to a kid with PKU. I wouldn’t have missed it on the Other Site. Isolated communities excel at using Twitter to cohere around spotlight days or months. But in good news today I’ve found two other Mastodonians using the PKU #. Our rare community just grew a little. #RareDisease #RareDiseaseDay #PKU #phenylketonuria #Metabolic #PKUlife

#TeXmacs #Mogan #PKU

We just give a talk 《Core Concept and Architecture of Mogan Editor》 in PKU Linux Club, here is the recording:
https://www.bilibili.com/video/BV1RR4y1k74X

The Mogan Editor parts starts from 00:52:00

An inspiring story @LeitrimOnline @LeitrimLive @SligoChampion @sligoweekender @OceanFmIreland @shannonsidenews
RT @sheehangilroy: What happens when a baby gets a positive heel prick test in the first week of life? How would you cope with your child's diagnosis? Navigating my #PKU journey. Please SHARE to help #RaiseAwareness of a challenging and commonly misunderstood rare condition

https://www.youtube.com/watch?v=KX9xvZgZ7Hc&t=3s

🐦🔗: https://nitter.eu/MarianHarkin/status/1596178533533249536

Important talk from Bernadette Gilroy raising awareness about PKU, the importance of newborn screening and lifelong services and support for people living with PKU and the reality of living with #PKU.

https://www.youtube.com/watch?v=KX9xvZgZ7Hc&t=3s

🐦🔗: https://nitter.eu/ClareDalyMEP/status/1593555685568135174

Delighted I could host a meeting between @official_espku and 🇪🇺 Health Commissioner @SKyriakidesEU today to discuss the Orphan Medicinal Products Regulation, unmet medical need and other issues of importance to the European #PKU community.

🐦🔗: https://nitter.eu/BillyKelleherEU/status/1593209692888891392

If you are curious about #PKU, the NSPKU has got a handy guide on PKU here:

https://nspku.org/about-pku/

Woo! My latest #pku #bloodtest result is 401umol/L!

For PKU folks in the UK, the good range to be at is between 120umol/L and 650umol/L (with 700umol/L being the absolute limit before doctors and dietitians are concerned).

6 months of good blood results! Hopefully I'll be able to keep the momentum for a whole year!

I'll do an #introduction post here:

Hello! I'm Soheb, and I'm a software developer in the #UK. I also have a genetic disorder called #PKU which means I have to restrict the amount of #protein I have daily or I risk brain damage. Very serious stuff!

I've also developed both a website and a mobile app called PKU Calculator (https://pkucalculator.com) to help me manage my daily low protein diet, and other folks in the PKU community use it too, which is nice!

Feel free to say hi and ask questions!

#introduction part 3 (last of a trilogy, honest): over on the other site I had built up links to some good support networks, specifically #RareDisease, #metabolic disorder and disease, and #phenylketonuria, #PKU. It would be great to re-connect on this site.

RT @official_espku: Tomas Zdechovsky an MEP from Czech Republic and supporter of the European Parliament Cross-Party Alliance on PKU on the occasion of International PKU Day, with this photo, expresses his support for PKU Community!

#pkuday2022 #PKUDAY #pku #PKUMEPALLIANCE

🐦🔗: https://nitter.eu/TomasZdechovsky/status/1542840984861642760

RT @official_espku: #PKUDay2022 #PKUDay #PKU #PKUMEPALLIANCE #ESPKU

The EU legislation on medicines for rare diseases is being revised. An opportunity for ESPKU/the EP Cross-Party Alliance on PKU to put the spotlight on PKU. More tomorrow, on International PKU Day.

🐦🔗: https://nitter.eu/BillyKelleherEU/status/1542070466696863744

RT @PKU_Ireland: Happy International PKU day 2022

#PKU #RareDisease #BrainHealth #EmpoweringPKU #ESPKU #PKUDay2022

🐦🔗: https://nitter.eu/FitzgeraldFrncs/status/1541806502582915072