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.@Daily_Express .@cftrust Look at this for pure, selfless dedication to a cause and to funding research into a cruel, genetic disease. Over £300k raised by one devoted dad. Well done @liammchugh1961 #coys #dailyexpresscrusade4cf .@BorisJohnson .@NHSEngland #cysticfibrosis
A very proud day. Another @LondonMarathon completed. My 60th Birthday celebrated in style and my total now stands at £309k raised for @cftrust. I couldn't feel more happy. People coming up to me congratulating me I've never met. So humbling. #309k #cysticfibrosis #60thbirthday
Violife Cocospread 66g = 1 #pku exchange Great on #lowprotein toast (Thank you @charlmarx89) @asda @Morrisons @sainsburys @Tesco 😋😋😋
Another paper on Kuvan: a 3 year extension study looking at the use of sapropterin in children under the age of 4 years. Article freely available in Orphanet Journal of Rare Diseases
@NICEComms need to calculate the cost effective benefits of treatments like #kuvan for #PKU. The patient voice holds the key. Our experiences should be more important in the process. We are all experts who live with #PKU every day.
NHS England failed women with #pku by failing to give timely access to a drug #kuvan which prevents baby death, disability and immense stress on women. @NICEComms have also failed. The @RCPhysicians says the policy isn’t good enough as did every doctor in the consultation.
Time and time again, people with learning disabilities have worse outcomes - including higher risk of dying - in NHS hospitals. Having a LD should never be a reason to withhold life-saving treatment. Time this has got to stop.
A very proud day. Another @LondonMarathon completed. My 60th Birthday celebrated in style and my total now stands at £309k raised for @cftrust. I couldn't feel more happy. People coming up to me congratulating me I've never met. So humbling. #309k #cysticfibrosis #60thbirthday
Just a reminder, the NHS was supposed to review this policy in 2014, never did, and the clinical author of the policy admitted it was suboptimal. Tell me why it’s ok to leave women and babies at risk of avoidable harm. @FelicityKvesic @deb_cohen @ChrisMRiches @SharonHodgsonMP
The draft guidance by @NICEComms ignored the massive differential needs of this group. Disgraceful. And why @nhsengland doesn’t immediately put in place timely access to prevent harm is beyond me. Its senior representative admitted it gave access to women too late. @pmrleahy
Nothing short of scandalous
NHS England failed women with #pku by failing to give timely access to a drug #kuvan which prevents baby death, disability and immense stress on women. @NICEComms have also failed. The @RCPhysicians says the policy isn’t good enough as did every doctor in the consultation.
It’s great news unbranded (generic) versions of Kuvan are on their way to the U.K. The NHS has always blamed BioMarins pricing for the lack of access here. Soon there’ll be no excuses left if all patients can’t get this life changing treatment. @blakeydark @ChrisMRiches
Thank you @LordIanAustin for speaking about #PKU today in the House of Lords -the impact of this condition needs to be fully understood. Your pronunciation of phenylketonuria was excellent too!! @LizTwistMP @Jeremy_Hunt @Rees4Neath
@barbaramcgove10 @PKUFamily @macdonj @SharonBuckley @NICEComms Agree! What a great team performance, it was the best meeting I have attended. Thank you for bravely standing up to all the people who should be fighting for treatment for their patients not against!!! 😊
Day 9: History of PKU. #PKUday2021
At the @NICEComms meeting yesterday I referred to international opinions @NSPKU sought on key clinical issues in the draft #kuvan guidance. They were from - Dr Susan Waisbren of Harvard Medical School, Prof Leuzzi of Uni of Rome, Prof. van Spronsen, Uni of Groningen
Professor Shawn Christ of University of Columbia Missouri Prof Dr Cary Harding of University of Oregon These distinguished scientists questioned the underlying assumptions in the draft guidance on #kuvan published by NICE. @ChrisMRiches @LizTwistMP
The drug was not actually Kuvan - but Kuvan was then developed as a consequence of the original BH4 given in these early studies.
A little bit of BH4 (Kuvan) history in PKU. In 1999 it was found for the first time that BH4 lowered blood Phe in 4 of 5 Japanese patients. They were given 10mg/kg of BH4 in a loading test. #PKUDay2021 This was such an exciting find but 22 years ago!
The U.K. once led the world in #pku treatment. The low phenylalanine diet was invented and used first here. We were one of the first countries to introduce comprehensive newborn screening. Let’s catch up. #kuvan12yearswaiting @blakeydark @CallTheMidwife1 @NSPKU
English Cheesecake Company - Deliciously Raspberry Cheesecake and protein exchange amounts (1 PKU exchange =1g protein) @thevegankind
It’s the 3rd NICE committee meeting for #kuvan tomorrow. One of the problems for discussion is that NICE ignored the issue of both paid and unpaid care for people with pku. Dietary care for pku is a hard job. That’s why alternatives are needed, and need fair assessment. @NSPKU
For #CarersWeek, why not check out our guideline on supporting adult carers? There are millions of adult carers in the UK, and our guidance aims to help ensure they are given the right information and support. Find out more here: bit.ly/3cpuAiB
PKU GOLIKE – Feel t... @GOLIKEmetabolic
458 Followers 678 Following Brandnew medical food for a real change in dietary management of inborn errors of metabolism. #PKU
NSPKU @NSPKU
3K Followers 1K Following The NSPKU exists to help and support people with PKU, their families and carers. It was formed in 1973, see https://t.co/f9QHejwhkW
Sam H Ahmedzai @Samhja
2K Followers 2K Following Academic physician - palliative medicine & supportive care. Now semi-retired. Love being a grandpa! Learning bird photography. Live UK, Norway.
PKUGOLIKE 3-16yrs UK @PKUGOLIKE_UK
63 Followers 324 Following PKU GOLIKE 3-16yrs is a brand-new food for special medical purposes (FSMP). Talk to your paediatric dietician / paediatric clinician for more information.
Sharon Buckley @SharonBuckley
948 Followers 503 Following
AlisonGreen @AlisonGreen70
55 Followers 203 Following Works for @NSPKU - Charity Coordinator - love my job! 😊 two amazing daughters (one a PKU Princess) 🥰
Paul McKellar @mckellar_paul
583 Followers 402 Following English Literature (BA Hons) Graduate 2021. Support Worker. PKU Warrior. Trialist of anything.
PKUDrugsNow @NowPku
116 Followers 143 Following #PKUDrugsNow is a campaign modern medical treatments for people living with PKU #lifechangingdrugs
CDG UK @UK_CDG
632 Followers 715 Following CDG UK is the national charity supporting patients and families affected by Congenital Disorders of Glycosylation. Registered Charity Number 1191342.
Leanne Barnett @leanne7976
165 Followers 564 Following
Barbara McGovern @barbaramcgove10
148 Followers 97 Following Northern lass proud Mam of 3 Fighting for fair treatment of the #rare disease #PKU #Kuvan #12yearswaiting
dan @dan_diverse
371 Followers 2K Following This Is My Bio Thingy All comments are my own opinion Please Don’t Arrest me Mr Starmer
Mark @markedwards1231
239 Followers 435 Following Fulltime shift leader serving good quality pizzas! sides and desserts…. I have pku. pku doesn’t have me :)
Kelly-Marie Thompson @KellyMarieThom7
52 Followers 67 Following Im a single mum of 2, my daughter has PKU
Caroline Graham @CarolinePKU
403 Followers 637 Following Mum, Designer, Artist, NSPKU volunteer, 3 kids 2 with #PKU all views my own
PKU Association IE @PKU_Ireland
1K Followers 3K Following PKU Association of Ireland #SUPPORTINGPKU #LowProtein PKU Awareness in Ireland Registered Charity Number (RCN) 20202487
BCH Metabolics @MetabolicsBCH
3K Followers 2K Following At Birmingham Children's Hospital we care for children with inherited metabolic disorders on low protein diets. We strive to give them the best diets possible
Lynn Paul @LynnPaul_
37 Followers 49 Following
Emma @emmacook09
71 Followers 71 Following
Liana Hewitt @liana_hewitt
485 Followers 707 Following PKU. Ravenclaw. Book lover and amateur writer. I enjoy finding new adventures. A day is wasted if you do not learn something new
gillian taylor @gillyjtaylor
88 Followers 79 Following
Bernadette Sheehan Gi... @sheehangilroy
1K Followers 5K Following Lecturer Researcher Advocate #PKU #LowProtein #BrainHealth #RareDisease "Ní neart go cur le chéile" The views and opinions expressed here are solely my own
Kate Learoyd @PKUFamily
1K Followers 1K Following Mum, charity trustee, ask awkward questions, trying to cope with this icky platform: support @NSPKU for better future for #RareDisease #pku, tweeting own views
Richard Falcon @Richard37933542
15 Followers 98 Following
Blogger @phedupcampaign
397 Followers 572 Following Phedup is a patient action group campaigning for access to new treatments for the #RareDisease #PKU. Hope is strength.
Adela Humphries @HeartUnity55
12 Followers 60 Following Commited Christian married to Ian have a Son and Daughter from a previous marrage 3 Grandsons Hobbies listening to WR247, ebay, facebook.
Max Lee @maxjlee64
43 Followers 237 Following
Natasha Fox (Cotter) @foxcot
685 Followers 2K Following Mum of beautiful brave girl born with PKU. Senior leader. NPQH. Swim mum and swim coach. Passionate about teachers being valued. All views my own.
PKU GOLIKE – Feel t... @GOLIKEmetabolic
458 Followers 678 Following Brandnew medical food for a real change in dietary management of inborn errors of metabolism. #PKU
PKUGOLIKE 3-16yrs UK @PKUGOLIKE_UK
63 Followers 324 Following PKU GOLIKE 3-16yrs is a brand-new food for special medical purposes (FSMP). Talk to your paediatric dietician / paediatric clinician for more information.
Mark @markedwards1231
239 Followers 435 Following Fulltime shift leader serving good quality pizzas! sides and desserts…. I have pku. pku doesn’t have me :)
CDG UK @UK_CDG
632 Followers 715 Following CDG UK is the national charity supporting patients and families affected by Congenital Disorders of Glycosylation. Registered Charity Number 1191342.
Charlotte Buckley @CharlotteB_PKU
210 Followers 159 Following I’m a learning support assistant within FE. PKU patient.
Sharon Buckley @SharonBuckley
948 Followers 503 Following
Geoff Maynard @g_maynard
1K Followers 2K Following Express Editor, husband, father of 3, United fan, @EssexCricket. Views are all mine. [email protected]
Chris Riches @ChrisMRiches
1K Followers 754 Following @Daily_Express NW Correspondent, CF & PKU Campaigner, 2019 British Press Awards🏆& 2020 British Journalism Awards Campaign Journalist of the Year 🏆. ❤️Spurs
Anita MacDonald @macdonj
2K Followers 628 Following All tweets discuss low protein foods to help children on low protein diets. All views are my own.
Paul McKellar @mckellar_paul
583 Followers 402 Following English Literature (BA Hons) Graduate 2021. Support Worker. PKU Warrior. Trialist of anything.
Cambrooke UK @cambrookeuk
436 Followers 147 Following Cambrooke UK provides Glytactin GMP formula for the dietary management of phenylketonuria (PKU).
PKUDrugsNow @NowPku
116 Followers 143 Following #PKUDrugsNow is a campaign modern medical treatments for people living with PKU #lifechangingdrugs
H Fisk Johnson, Ph.D. @HFiskJohnson
483K Followers 250 Following CEO @SCJohnson, Scientist, and Father committed to environmental and social progress. “What matters most is living up to the expectations of future generations”
Low Protein Connect @LowProConnect
1K Followers 383 Following Providing delicious recipes, education, great services and inspiration to support people with metabolic conditions. #FINDYOURPHENOMENAL
Leanne Barnett @leanne7976
165 Followers 564 Following
Lynn Paul @LynnPaul_
37 Followers 49 Following
Dan Ormerod @dan_ormerod
47 Followers 101 Following
Barbara McGovern @barbaramcgove10
148 Followers 97 Following Northern lass proud Mam of 3 Fighting for fair treatment of the #rare disease #PKU #Kuvan #12yearswaiting
Rare Diseases Ireland @RareDiseasesIE
4K Followers 1K Following Equitable access to healthcare and opportunity for all! RDI - A united voice for people living with rare diseases in Ireland RCN 20044633
Kate Rumballe @PKU_Kate
479 Followers 109 Following Equestrian rider with #PKU. Mum & step mum of 4. Aussie living and loving the farm life and working towards earning a living from the land we live on.
Int. PKU Day @PKU_Day
306 Followers 12 Following
Around...World...PKU @PKU_World
164 Followers 23 Following Sharing my experiences of travelling the world and coping with a #PKU diet
NPKUA @NPKUA_Info
1K Followers 448 Following The mission of the National PKU Alliance is to improve the lives of individuals with PKU and pursue a cure.
PKUhub @PKUhub
1K Followers 434 Following PKUhub... The virtual meeting point for PKU's...such a big part of a small number of peoples' lives...Est'd 2004. It's all in our genes! 🧬
Promin Metabolics @ProminMetabolic
1K Followers 167 Following Family run company supplying low protein foods and meal solutions for people with #PKU
Caroline Graham @CarolinePKU
403 Followers 637 Following Mum, Designer, Artist, NSPKU volunteer, 3 kids 2 with #PKU all views my own
Emma @emmacook09
71 Followers 71 Following
Max Lee @maxjlee64
43 Followers 237 Following
Suzanne Ford @SuzanneFord19
198 Followers 162 Following Dietitian working with people who have Inherited Metabolic Disorders.... Tweeting own views
BCH Metabolics @MetabolicsBCH
3K Followers 2K Following At Birmingham Children's Hospital we care for children with inherited metabolic disorders on low protein diets. We strive to give them the best diets possible
NSPKU @NSPKU
3K Followers 1K Following The NSPKU exists to help and support people with PKU, their families and carers. It was formed in 1973, see https://t.co/f9QHejwhkW
Natasha Fox (Cotter) @foxcot
685 Followers 2K Following Mum of beautiful brave girl born with PKU. Senior leader. NPQH. Swim mum and swim coach. Passionate about teachers being valued. All views my own.
Richard Falcon @Richard37933542
15 Followers 98 Following
gillian taylor @gillyjtaylor
88 Followers 79 Following
Kate Learoyd @PKUFamily
1K Followers 1K Following Mum, charity trustee, ask awkward questions, trying to cope with this icky platform: support @NSPKU for better future for #RareDisease #pku, tweeting own views
BIMDG @BIMDG
1K Followers 310 Following Twitter account for British Inherited Metabolic Disease Group. Tweets by Dr James Nurse (@drjnurse) and Dr Rachel Carling (@rachblacklabel).
Bernadette Sheehan Gi... @sheehangilroy
1K Followers 5K Following Lecturer Researcher Advocate #PKU #LowProtein #BrainHealth #RareDisease "Ní neart go cur le chéile" The views and opinions expressed here are solely my own
PKU Association IE @PKU_Ireland
1K Followers 3K Following PKU Association of Ireland #SUPPORTINGPKU #LowProtein PKU Awareness in Ireland Registered Charity Number (RCN) 20202487
Gene People @GenePeopleUK
5K Followers 2K Following Charity supporting families affected by genetic conditions providing the UKs only free Genetic Counsellor-Led Helpline 0800 987 8985 | [email protected]
Liberty Hanson @LibertyHanson3
93 Followers 141 Following Documentary Filmmaker, Producer at @lightandsoundpr, Presenter. Currently in production for #PKU #Documentary Film with @JackEverittDP
Paula Hallam RD PG Ce... @kids_dietitian
1K Followers 804 Following 👶🏼 Paediatric Dietitian 🌱Owner of Plant Based Kids #plantbasedkids #toddlernutrition #weaningworkshops 👭Mum to 2 girls
Blogger @phedupcampaign
397 Followers 572 Following Phedup is a patient action group campaigning for access to new treatments for the #RareDisease #PKU. Hope is strength.
Phed Up @PhedUp_PKU
23 Followers 1 Following Phed Up is an independent group of PKU patients and parents of PKU sufferers campaigning for new PKU treatment funding from the NHS (Kuvan, and later PEG-PAL).Trends for United States
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