NFryKC

[NFryKC @NFryKC]

@JonnyRoot_ “Specifically, f u b/c you think using a slur makes you look clever, but all it does is harm kids who have actual learning differences and deal with that garbage constantly. You're using a real disability as a stand-in for 'bad reasoning' because you're too lazy to articulate

[NFryKC @NFryKC]

Specifically, f u b/c you think using a slur makes you look clever, but all it does is harm kids who have actual learning differences and deal with that garbage constantly. You're using a real disability as a stand-in for 'bad reasoning' because you're too lazy to articulate

[KFry @KFryKC]

We need you!! We have fallen a little behind, but we have 8 more days left of voting, so its not too late. AND you can vote once a day, per email. Please help us win this much needed donation! #acureforcharlie #kc #vote #nonprofit

https://t.co/D5NLblAKyp

[KFry @KFryKC]

Thank you @EmilyKMBC for helping us share our plea for @HorizonNews to #careaboutrare & live up to what they say are their core values.

Please share & help us bring gene replacement to fruition so we don’t have to reply on #bigpharma to #dotherightthing. https://t.co/SBuLO2BWyY

[SLC6A1 Connect @SLC6A1_Connect]

This is a simple drug to manufacture. Meet patients unmet need by going to incredible lengths.

@Maxs_Milestones @EveryLifeOrg @RareDiseases @pulte @RichardEngel @curestxbp1 @HorizonCEOTW

[Ethan Perlstein 1-to-N @eperlste]

See https://t.co/Fxo0sutROv for more color

[Ethan Perlstein 1-to-N @eperlste]

At least Martin Shkreli had the honesty to tell us he was price gouging.

Why does @HorizonCEOTW hide behind “patients first” platitudes while his company @HorizonNews charges $740,000/year for an old drug (Buphenyl/sodium phenylbutyrate) that costs $10,000/year everywhere else?

[KFry @KFryKC]

We need public support for @HorizonNews & @HorizonCEOTW to #dotherightthing. We are simply mothers fighting to give our children a chance to live. @Maxs_Milestones @60Minutes @moms @statnews @andersoncooper #BigPharma #Bitcoin

https://t.co/j5qRtxNOlw

[KFry @KFryKC]

Please help us fight this greedy #BigPharma - who can afford a life saving medication at $2,027 a day!!!! @KCStar @KCMO @60Minutes @amprog @GMA @zulfikarabbany @SLC6A1_Mom @RobinRoberts @Ginger_Zee

[Dawn M Torrence Ireland @cdhwings]

@SLC6A1_Mom, @Milestones_For_Maxwell, @HorizonNews, @HorizonCEOTW @RareDiseases @GlobalGenes Horizon, please provide access to life changing medication for SLC6A1 patients. The annual cost of Ravicti is $740,000, it costs pennies to manufacture. https://t.co/LJXsSEc6LQ

[SLC6A1 Connect @SLC6A1_Connect]

@bsyngap @HorizonCEOTW @HorizonNews @therapies That is exactly right. The cost of the drug should not determine the company's threshold for expanded access.

@EveryLifeOrg @RepAOC @RichardEngel

[KFry @KFryKC]

The fear for Charlie's quality of life increases every day, especially with news like this. @SLC6A1_Mom @Oprah @TheEllenShow @drdrew @RareKC @GlobalGenes @HorizonNews @HorizonCEOTW @RareDiseases @RichardEngel @TODAYshow @HuffPostParents @LiveKellyRyan

https://t.co/j5qRtxNOlw

[nkennedy124 @nkennedy124]

The parents hoped an existing drug might keep their kids from having seizures. Then they saw the price https://t.co/P9MuUyCgoS via @statnews @SLC6A1_Mom, @Milestones_For_Maxwell, @HorizonNews, @HorizonCEOTW @RareDiseases @GlobalGenes

[Dr. Kelley Capper @KelleyRCapper]

KC friends! If you are interested in some fun and giving back then please consider signing up for A Cure for Charlie Pickleball Tournament on 9/18 @ChickenNPickle! #SLC6A1 @KFryKC @SLC6A1_Mom

Link => https://t.co/viuudxMdhF

[Fighting for Maxwell @Maxs_Milestones]

Hoping @HorizonNews will go to incredible lengths impact the #SLC6A1 Community as we begin a small trial to repurpose #Ravicti ($722k/year!)

Please Retweet

#MilestonesforMaxwell #ACureForCharlie @SLC6A1_Mom @HuffPost @OnceUponAGene

[Donna Pitman KMBC @DonnaPitmanKMBC]

Meet Charlie! He's 3 y/o & lives w/ a rare genetic disorder. Here's his story on @kmbc & how you can help while celebrating #ChiefsKingdom
https://t.co/jHTfQK4AYB

[KFry @KFryKC]

#Christmas cheer from #acureforcharlie! Be sure to drive down 68th Terrace/ #candycanelane in @BrooksideKCity to see our 8 ft candy canes! @KCStar @KCMomCollective @KCMO @KMBZradio @TheEllenShow @somegoodnews @fox4kc #HolidaySeason #slc6a1 @armourfieldskc @NFryKC @Maxs_Milestones

[KFry @KFryKC]

This has been a hard week but seeing our #lights come on brightened our #hearts. Wishing you a #MerryChristmas! #ACureforCharlie! @tanksgoodnews #Christmas2020 #CountdowntoChristmas #Thanksgiving #family @EmilyKMBC @kmbc @DonnaPitmanKMBC @KatieHornerKMBC #kc

[KFry @KFryKC]

Meet Charlie Fry, he will be 3 on Sunday and needs a #cure before his next birthday. He suffers from seizures, learning delays and debilitating anxiety. Every $ raised goes to research that will eventually cure him & all kids with #SLC6A1. @Maxs_Milestones https://t.co/f8rxpUQ3WS

[KFry @KFryKC]

This is the most heartfelt story I have read about a #mother. Everyone needs to help these innocent #kids. #help @somegoodnews @goodhousemag @TheEllenShow @parentsmagazine @parenting @people @RealSimple @pbsparents @gatesfoundation
https://t.co/xGZ0ByLc7Z