#pkuawareness — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #pkuawareness, aggregated by home.social.
-
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/ -
Article important sur mon blogue pour l’avenir de l’accès aux traitements pour la #phenylcetonurie au #Quebec. Merci à Marika et sa fille Gaïa d’avoir pris le temps d’en parler à la radio.
*
Important article on my blog for the future of treatments access for #phenylketonuria in #Quebec. Thanks to Marika and her daughter Gaïa for taking the time to talk about it on the radio.https://www.phenylcetonurie.ca/p/la-situation-du-palynziq-au-quebec?r=47am9s
-
New blog:
➡️ How I responded when my GP surgery asked if I still need my PKU supplement and foods, with example email.
Fingers crossed, I seem to have solved the problem. Hopefully, this will help others.
"This was the first time a GP had questioned my PKU supplies. The temptation to respond with “are you being serious right now!” was pretty strong"
Have you had similar problems? I'd love to hear how you managed them.
-
Annual greetings to those celebrating Easter on this day but have dietary restrictions regarding chocolate. Hope you had a good day and satisfied your sweet tooth in the way that suits you.🥚🐣 #DietaryRestriction #RareDisease #RareDiseaseCommunity #DairyFree #PKU #PKUAwareness #Mastodaoine