Photos and videos
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
topnotchheatingandair.com/gi…
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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. SLC6A1connect.org
11 Jun 2021
Charlie and other children with rare disorders like Slc6a1 could be helped by an existing drug, but the price is jaw-dropping. The drug company says it's waiting for the results of upcoming trials to determine the next steps. @SLC6A1_Mom @KFryKC
kmbc.com/article/kc-family-w…
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NFryKC retweeted
7 Jun 2021
This is a simple drug to manufacture. Meet patients unmet need by going to incredible lengths.
@Maxs_Milestones @EveryLifeOrg @RareDiseases @pulte @RichardEngel @curestxbp1 @HorizonCEOTW
5 Jun 2021
For health policy aficionados: It took nearly 8 yrs to convince @US_FDA that the drug in question (Ravicti) was “clinically superior” to the previously available drug, Buphenyl. Ravicti & Buphenyl are prodrugs of the same compound. See @fdalawblog thefdalawblog.com/2016/07/th…
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NFryKC retweeted
10 Jun 2021
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?
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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
statnews.com/2021/06/03/pare…
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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
8 Jun 2021
My friend @SLC6A1_Mom is trying to save her little boy's life. Treatment is available but no one can afford it. Have some compassion. Please.
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NFryKC retweeted
7 Jun 2021
@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. statnews.com/2021/06/03/pare…
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NFryKC retweeted
7 Jun 2021
That is exactly right. The cost of the drug should not determine the company's threshold for expanded access.
@EveryLifeOrg @RepAOC @RichardEngel
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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
statnews.com/2021/06/03/pare…
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NFryKC retweeted
7 Jun 2021
The parents hoped an existing drug might keep their kids from having seizures. Then they saw the price statnews.com/2021/06/03/pare… via @statnews @SLC6A1_Mom, @Milestones_For_Maxwell, @HorizonNews, @HorizonCEOTW @RareDiseases @GlobalGenes
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NFryKC retweeted
2 Jun 2021
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 => givergy.us/acureforcharlie/?…
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NFryKC retweeted
24 May 2021
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
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NFryKC retweeted
1 Feb 2021
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
kmbc.com/article/kc-family-f…
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#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
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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
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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 facebook.com/donate/79723304…
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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
people.com/human-interest/tr…
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I hope everyone enjoys food like this kid does 🤣! Don’t forget to order @pizzahut today and use the code 1112 to help this sweet boy fight #SLC6A1 and end the #seizures! #pizzadelivery #pizzahut #pizzalover #thursdaymorning #thursdaytakeout #ACureForCharlie #RetweeetPlease
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This is for you @PatrickMahomes! Apologies to #JohnDenver! GO CHIEFS!!! #SuperBowl2020 #GoChiefs #PatrickMahomes #ChiefsKindgom #Chiefs #Miami #kcmo @kcchamber
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