Christopher Cassidy

[Anita MacDonald @macdonj]

New aspartame free drink list for people with PKU available soon

[Anita MacDonald @macdonj]

Good luck to the amazing Annie Skidmore @AnnieSkidmore2 running the London marathon today! We know you will smash it!

[Christopher Cassidy @chrisk_1986]

@macdonj We would all be lost without you @macdonj
It is a true honour to know you. 😇

[Liverpool Echo @LivEchonews]

There's nothing I can do but I won't stop fighting for my daughter https://t.co/O3g1jd3Xv9

[Wirral Globe @WirralGlobeNews]

Wirral girl’s rare condition that changed family’s life overnight https://t.co/JPrxH6N4qk

[Christopher Cassidy @chrisk_1986]

Had two more productive meetings today with @PaulMaskeyMP and @CathalMall to discuss life with PKU. We talked about current treatments and what new treatments are coming down the line and what support we will need both in Westminster and locally here. @NSPKU

[Christopher Cassidy @chrisk_1986]

Had the honour of spending time today with another local MP @patcullen9 who took time out of her day to discuss the topic of PKU and the journey we have taken so far and the future of what lay ahead for people with PKU including new technologies and treatments to come. #pku

[Dáire Hughes MP @DaireHughesSF]

🟢 Phenylketonuria Awareness and Support 🟢

Delighted to catch up with Armagh’s Chris Cassidy in Westminster, a powerful advocate for people suffering from Phenylketonuria (PKU).

This rare, lifelong metabolic condition affects how people process amino acids and can cause severe and irreversible brain damage. Strict, medically supervised diets and specialist treatments are required to manage it.

It is essential that awareness of this condition is raised and that required services are in place and readily available.

New drugs and developments in technology have great potential in reducing the burden for those living with this condition.

We have to be in a position to maximise the potential of these developments right across the island and I look forward to working with Chris and others to advance this.

#NSPKU #StrongerTogether #HungryForChange #PKU

[Christopher Cassidy @chrisk_1986]

Thank you @PKUFamily for the post.
Yes off we go to Westminster to campaign for what is needed and deserved 💪💪

[Kate Learoyd @PKUFamily]

Armagh PKU campaigner gets set for Westminster in bid for new ‘lifechanging’ drug – Armagh @nspku https://t.co/q94i1GeUMt

[Christopher Cassidy @chrisk_1986]

https://t.co/YzhjFs7WWI

[Kate Learoyd @PKUFamily]

We at @nspku want modern blood monitoring and we want the fantastic new drug sepiapterin/sephience. Write to your MP, explain #pku and your life so they can meet researchers in Parliament on 11 November with ⁦@macdonj⁩

[NSPKU @NSPKU]

#NSPKU has moved!
#Newyear #Newaddress
As we head into another year, sending very best wishes to all in the #PKU community for a healthy & happy 2025!
💚💚💚❤️❤️❤️💚💚💚

[Kate Learoyd @PKUFamily]

This is so true. I know many people with #pku who claim PIP to help them manage their health and stay in work. @nspku

[Anita MacDonald @macdonj]

Its that time of year again for our Xmas event on the 17th November. Just over 1 week to go and the labelling and sample bag packing has began in earnest! Some very late nights ahead!

[Christopher Cassidy @chrisk_1986]

#NSPKU what a day. Never put myself through anything like it before. Great turn out for the NI team. The sense of achievement was epic. The funds raised by everyone in the uk will go towards helping support NSPKU in our quest to improve services and support for people with pku.

[NSPKU @NSPKU]

#PKU community is making progress in our #Raceto10k
🥳🥳🥳🥳💪💪💪💪
Click here to support our runners and walkers - help us to support ppl living w #PKU
✅✅✅
https://t.co/K3v7M97IFz

[NSPKU @NSPKU]

📣 Our latest fundraiser!
NSPKU Race to £10K 🏃
Sun 15th September 2024
#PKU community will come together to take part in races around the UK & raise £1OK for NSPKU
Gentle joggers or Mo Farah-speedsters - all welcome
Get involved +show your support: https://t.co/jawtV8AyOD…

[NSPKU @NSPKU]

📣 Our latest fundraiser!
NSPKU Race to £10K 🏃
Sun 15th September 2024
#PKU community will come together to take part in races around the UK & raise £1OK for NSPKU
Gentle joggers or Mo Farahs-speedsters - all welcome
Get involved +show your support: https://t.co/K3v7M97IFz

[Anita MacDonald @macdonj]

Issues with patient access to low protein foods with PKU the problems observed by the BIMDG dietitians. This work is interesting and much needs to improve #BIMDG24 @NHSEngland @NSPKU

[Anita MacDonald @macdonj]

One of the promising new treatments for PKU that we talked about this morning at the @NSPKU online meeting. Sepiapterin is an oral medication that should help at least 50% of the PKU population