PKUDrugsNow @NowPku

#PKUDrugsNow is a campaign modern medical treatments for people living with PKU #lifechangingdrugs Joined November 2019

Tweets

70
Followers

116
Following

143
Likes

92

Strawfie Challenge @strawfie

6 years ago

Help us get this petition to 20,000? Thanks!! 😀 petition.parliament.uk/petitions/3000… @KevPKULife @NowPku @InfamousGreggyG @GreatStrides65 @myCFHero @MarcCotterill @PKUbump #pku #kuvan #health #TuesdayMotivation #TuesdayThoughts #patients #family @BrynSeiriol @laurence_powell @rrcffighters

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Silver Orchid 🪷 @silver_orchid_

7 years ago

Please everybody can you sign? This could allow people with my condition access to a life changing drug that has been priced out & @NHSEngland wont back. We have support from a number of MPs now we need this petition...can you help us? @MaddieD1280 @TeaKayB @bigtallbird @EPCOT02

PKUDrugsNow @NowPku

7 years ago

People with PKU have to avoid 85% of food or they risk irreversible brain damage. This drug would give people with PKU the freedom to eat without anxiety. NICE say Kuvan is too expensive but our diets are made up of a lot of expensive prescription items. petition.parliament.uk/petitions/3000…

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PKUDrugsNow @NowPku

7 years ago

Hi ⁦@ProfBrianCox⁩ We are campaigning for people with #PKU who risk 🧠damage from EATING A medicine/treatment is available across Europe but not the UK so they avoid 85% of food. This drug has been available for 11 years Please sign and share petition.parliament.uk/petitions/3000…

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PKUDrugsNow @NowPku

7 years ago

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Strawfie Challenge @strawfie

7 years ago

Mum Leanne Barnett knows the anguish of living without life-changing drug Kuvan as her twin girls have PKU. Every day full-time carer Leanne measures & weighs each meal for Olivia and Ruby to be sure they are low in protein Pls sign and RT this petition: petition.parliament.uk/petitions/3000…

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Strawfie Challenge @strawfie

7 years ago

@PKUFamily @leanne7976 @NowPku @alexpalmerjones @Carolin93205471 @PKUbump @Liam79260142 #health #people #family #patients #kuvan #pku

Strawfie Challenge @strawfie

7 years ago

There is no lower age limit for UK Government & Parliament petitions. If your child or teenager is willing to sign, they can legally do so. Please help the #PKU community access a drug that can make a real difference in their lives. petition.parliament.uk/petitions/3000…

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PKUDrugsNow @NowPku

7 years ago

@strawfie @PKUFamily @leanne7976 @alexpalmerjones @Carolin93205471 @PKUbump @Liam79260142 Thanks was not aware of this x

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PKUDrugsNow @NowPku

7 years ago

Please can everyone sign and share. Get everyone you know to sign, this will help the community so much!

Kate Learoyd @PKUFamily

7 years ago

petition.parliament.uk/petitions/3000… We are live now #pku peeps and #cf warriors and #raredisease fighters everywhere give us a hand to resolve the UKs longest running medicine injustice. #kuvan11yearswaiting @ChrisMRiches @strawfie @nspku @njrchfoundation

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Jim Sadler @jimoftheunion

7 years ago

@PKUFamily @mckellar_paul @MattHancock @ChrisMRiches Food is so culturally ingrained, avoiding it is literally impossible. I think it's an outrage to threaten safeguarding measures here, poor parents.

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PKUDrugsNow @NowPku

7 years ago

@PKUFamily @MattHancock @ChrisMRiches Omg that is absolutely outrageous!! As if this isnt hard enough!! I am absolutely shocked about this!!!

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PKUDrugsNow @NowPku

7 years ago

@ElizabethRoper1 @PKUFamily @foxcot She is A-MAZ-ING

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Kate Learoyd @PKUFamily

7 years ago

@MattHancock Genuinely delighted to hear there’s a plan for #trifakta. Really fantastic news. What’s the plan for pku and #Kuvan? @ChrisMRiches @TheSun

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Caroline Graham @CarolinePKU

7 years ago

It’s not only the start of a new year but a new decade. People living with #PKU were denied access to #Kuvan for the last decade so let’s sort it for the next. A new year resolution for @BorisJohnson and @MattHancock -keep your pledge #GetKuvanDone

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Kate Learoyd @PKUFamily

7 years ago

@EmmaHardyMP I support people with PIP claims for the rare disease #pku - the comments people get from assessors are awful. Adding insult to injury. Would hope for a reformed system. @NSPKU @LizTwistMP

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Kate Learoyd @PKUFamily

7 years ago

A thread 🧵 I agree with. We want #pku treatments that keep everyone safe. A treatment that requires superhuman 🦸‍♀️ levels of skill, determination and hours of time isn’t good enough. Most of us are mere mortals. #GetKuvanDone #PegvaliaseNext

Kate Learoyd @PKUFamily

7 years ago

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Barbara McGovern @barbaramcgove10

7 years ago

@LizTwistMP @PKUFamily @vickyford @NickTorfaen That’s great to hear @LizTwistMP your support has been amazing. Encouraging also to read that @BorisJohnson has pledged to do his utmost to get #kuvan in a recent Sun newspaper article. Our community will make sure he’s as good as his word!!

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Strawfie Challenge @strawfie

7 years ago

Now that @BorisJohnson has got the election victory under his belt, let's hope he keeps this promise to help people with #pku thesun.co.uk/news/10539169/… #pku @NowPku @PKUFamily @leanne7976

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Bianca Albanese @DrBAlbanese

7 years ago

Living with #pku isn't easy. Many things impact on our ability to manage the condition. #stress is one. Link to post below ⬇️ #phenylketonuria instagram.com/p/B5FdMmLnv4r/…