Caroline Bridges

[angela thomas @thomasapb]

Hi @waitrose and @KokoCoconut - dismayed to find Koko Plain no longer @ local store! V difficult to find locally (SE England!). I & others with #raredisease #PKU rely on these products as daily necessity for extremely restricted medical low protein diets! Please reconsider!

[Secret Headteacher @secretHT1]

Dear all gluten free bread companies,

People who are gluten free do not have smaller appetites and don’t need tiny pieces of bread instead of full size slices.

Yours sincerely,

Hungry

[Kate Learoyd @PKUFamily]

Some people with pku are benefiting from sapropterin - which is great. They benefitted from the work of the WHOLE patient community and @NSPKU. I hope they all stay to help the 70% who don’t have a treatment yet. NSPKU needs help and support to do this work. It’s not over yet.

[Caroline Bridges @carolinebridge8]

Always good to read @PKUbump tweets. Says it how it is, hits the nail on the head and real. 🙏🏼

[Kate Learoyd @PKUFamily]

This isn’t what we fought for.

[Caroline Bridges @carolinebridge8]

@macdonj Love this!! 🍝 Happy birthday Spaghetti Junction!! 🥳

[Anita MacDonald @macdonj]

Heinz Spaghetti Junction- limited edition to celebrate Brum's spaghetti junction's 50th birthday! Protein content to be confirmed.

[Caroline Bridges @carolinebridge8]

@rachblacklabel @NSPKU @BIMDG Congratulations Rachel! Brilliant news.

[NSPKU @NSPKU]

Всі хто з тікають з України у Велику Британію з дітьми у яких діагнос Фенилкетонурія (PKU) звертайтесь будь-ласка за номером 030 3040 1090 або пишіть на [email protected], ми вам допоможемо
(Offer of help message in Ukrainian)
Thank you @PatrikVesely92
🇺🇦🇺🇦🇺🇦🙏

[Caroline Bridges @carolinebridge8]

@HannahMaudB ⬇️

[Anita MacDonald @macdonj]

Have you down loaded PKU Bite onto your mobile phone? So far there has been >800 downloads. Available free to download from Google Play or App store

[Tom Chimiak @TomChimiak]

I have been so proud over the last few days (as I always am) to be Ukrainian by surname and my grandad who came from there - the country is so brave and proud of their land as they stand up to the bully that is always Russia - keep fighting Ukraine #StandWithUkriane

[Anita MacDonald @macdonj]

In Poland, you can buy low protein foods in the supermarkets. We tried Bezgluten low protein foods some time ago - they were good. It would be fantastic if we could at least purchase some of these foods online in the UK - just hinting @ProminMetabolic. Thank you @august311283

[NSPKU @NSPKU]

Brilliant read below - meaningful & inspiring - thank you Sarah!
#pku living

[NSPKU @NSPKU]

Well done @BootstrapCook
Brilliant campaigner on poverty, food poverty, supporting families, noticing costs of foods in supermarkets, along w reduced availability low cost foods in supermarkets
Children on special medical #lowprotein diets also affected by rising prices 👍👍👍

[NSPKU @NSPKU]

Dietary Infirmation Booklet for #PKU
All #NSPKU members get a “wipe clean” copy, if you have got one, ask your dietitian
😃😃😃😎😎😎
Also you can download it here:
https://t.co/tegR2w5yqh

[Kate Learoyd @PKUFamily]

I’m looking ahead at the pipeline of new treatments coming for #pku which were all explained very well in this article 2 years ago.

Since then some of these investigational drugs have moved further down the track and a couple seem to have slowed/stumbled.

[White Rabbit @whiterabbitpiz]

Outrageously tasty gluten free and vegan pizzas available in ASDA 🇮🇹 Yes, we are just as excited as you are 😆 #pertutti

[Giles Paley-Phillips @eliistender10]

This is a wonderful gesture, thank you @rickygervais and #AfterLife team

[Susie Dent @susie_dent]

Word of the day is constult (17th century): to collectively play the fool/behave stupidly together.

[Richard K Herring @Herring1967]

Just when they’ve got the flat looking nice