Caroline Graham

Mum, Designer, Artist, NSPKU volunteer, 3 kids 2 with #PKU all views my own

[Caroline Graham @CarolinePKU]

Thank you @Jeremy_Hunt for recently writing to BioMarin pointing out they have an ethical responsibility to make sure their products are not just effective but also affordable. #Kuvan for #PKU needs to be made available by offering a fair price @NICEComms @NHSEngland
@blakeydark

[Sir Jeremy Hunt MP @Jeremy_Hunt]

My speech in the NHS debate yesterday supporting campaigners for Kuvan - desperately needed by PKU sufferers. I hope we can finally see some progress on this soon!

[PTC Therapeutics @PTCBio]

We are proud to announce the European Commission has granted marketing authorization for our medicine to treat children and adults living with phenylketonuria (PKU). Learn more: https://t.co/VK32JWJI0e

[Caroline Graham @CarolinePKU]

@BIMDG https://t.co/yD5pBBy85a

[Caroline Graham @CarolinePKU]

@BIMDG https://t.co/wiLRMTtm3D

[Caroline Graham @CarolinePKU]

@BIMDG https://t.co/rC3sO2hea2

[NSPKU @NSPKU]

Today = Rare Disease Day
Have a look at our clip to see
What Does #NSPKU do?
https://t.co/6f59dxQHqs
Thank you to our community for this!
Please share 🥳🥳🥳
📣📣📣
#PKU #phenylketonuria
#Rarediseaseday
#Rarediseaseday2024

[Rare Disease Day @rarediseaseday]

🚨 IT'S RARE DISEASE DAY GLOBALLY! 🚨 Join us marking #RareDiseaseDay 2024! Spread awareness, share stories, and support those living with rare diseases. Together, we make a lasting impact! #ShareYourColours

[Kate Learoyd @PKUFamily]

Last week @NSPKU presented in Oxford at the conference of @EvOx_Ltd
Evox is working on a possible new treatment for #pku. We presented on the patients life where almost all food is potentially toxic and can lead to brain damage.
Thank you for the invite. 🙏 🤞

[Sir Jeremy Hunt MP @Jeremy_Hunt]

Holly was magnificent! Thank you @CarolinePKU for coming with Holly and the amazing campaigning you have done over many years. And also to @XanderArmstrong @harrythepiano for giving us wonderful Christmas cheer!

[Caroline Graham @CarolinePKU]

It was an incredible evening last night, Holly performed a couple of arias in Downing Street for @ClassicFM 30th anniversary. Other performers included @XanderArmstrong @harrythepiano and Holly’s accompanist @girelandpianist. Thank you @Jeremy_Hunt for inviting Holly to sing.

[Chris Riches @ChrisMRiches]

https://t.co/uPbNJyQCU3

[NSPKU @NSPKU]

#pku #phenylketonuria #sapropterin
Thank you @Daily_Express @ChrisMRiches for today & the past 4 years
Modern treatment now more accessible to ppl w #pku across the UK
Thx @PKUFamily @CarolinePKU @macdonj @CarysHopkins_99 @emilysteers5 @SueOne18091703 @Teva_UK & many more
🥳🥳🥳

[Caroline Graham @CarolinePKU]

A landmark success for #PKU throughout the UK. We are all very grateful to @ChrisMRiches @Daily_Express This life changing drug is already helping many families including my adult children. The benefits are clear. I hope N Ireland will lift their unreasonable age limit of 22years

[Kate Learoyd @PKUFamily]

Update - Sapropterin in Northern Ireland - NSPKU
It’s good news sapropterin is available in Northern Ireland in line with NICE recommendations… but we need access extending to all adults so access is the same throughout the United Kingdom. ⁦@NSPKU⁩ https://t.co/Uc0V3Clr8T

[Caroline Graham @CarolinePKU]

@PKUFamily @NSPKU This is great news- the whole UK has access at last! Frustrating Northern Ireland has capped access at age 22. That makes no sense at all. Surely they will not lag behind the rest of the UK for long. Everyone with #PKU deserves the opportunity to access Sapropterin.

[Caroline Graham @CarolinePKU]

@LizTwistMP @ChrisMRiches took the time to meet the #PKU community at the @NSPKU conference. Their dedication and support demonstrates the best of politics and journalism. Lives have already changed but we still have work to do. Their continued commitment is exemplary.

[Anita MacDonald @macdonj]

Thank you @ChrisMRiches for joining the #NSPKU2022 conference yesterday and thank you for your + Daily Express support with the sapropterin campaign. We loved your article yesterday and we have many more new treatments to tell you about. It is an exciting time for all with PKU.

[Chris Riches @ChrisMRiches]

Share on Twitter https://t.co/PArpagPDzw Great to see these two live wires have benefited from #sapropterin #PKU @NSPKU @PKUFamily @CarolinePKU @leanne7976 Let’s keep pushing for new treatments for all. @Daily_Express #dailyexpresscrusade4pku @macdonj @NHSEnglandMedia @NICEComms

[Caroline Graham @CarolinePKU]

@hewood @BoostMusic1 @liftmusicuk That is amazing what an honour well done

[Caroline Graham @CarolinePKU]

@BraegerEmily @ChrisMRiches @NSPKU @PKUFamily @Jeremy_Hunt @LizTwistMP @macdonj @Daily_Express Thank you for taking the time to understand our PKU experiences and delivering such a great article. The @Daily_Express has helped change the lives of many families including mine. We are so grateful.

[Chris Riches @ChrisMRiches]

They certainly do!