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This is probably one of the worst things about this horrible disorder. Johnny was so happy to talk to his nanny, his emotion caused a seizure, listening to him trying to laugh while the rest of him is paralysed is heart breaking
#BeJohnnyhappy#KCNMA1 pic.twitter.com/rrEazprCwG -
Great article highlighting the work of one of my favorite scientists!
#KCNMA1@BKChannelshttps://twitter.com/MelEdits/status/1216772871801929733 … -
My family tried tried to help and support a little boy with a disorder we knew NOTHING about and fact of the matter is my family with the help of some amazing people had to raise £2000 to get my nephew tested in the USA which gave us a diagnosis of
#KCNMA1 within 6 weeks.Prikaži ovu nit -
@JohnnysStory3 walking out with Dan Crowley.
#bcfc#KCNMA1#BeJohnnyHappypic.twitter.com/wNPGc09oCX -
2 hashbrowns for breakfast before we go see the Dr, someones excited... about the hashbrowns not the Dr
#BeJohnnyhappy#KCNMA1 pic.twitter.com/W7Ddue2tlC
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Flying hero just like Buzz
#BeJohnnyhappy#KCNMA1 pic.twitter.com/BCnToMa5uC
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Literally he could not be happier
#BeJohnnyhappy#KCNMA1 pic.twitter.com/W4GXmWnsdo
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I've been watching the
@nytimes#Diagnosis show on@Netflix (fascinating look at cases from the column written by@LisaSandersMD) and now I'm looking up abstracts on#KCNMA1 and other rare disease genes to be presented at#ASHG19... -
#JournalTitle: Journal of#NeurosurgeryImaging and Techniques#CurrentIssue: Primary and Metastatic#BrainTumors Dissipate - Understanding and Intervention.#Author: Divya Khaitan and Nagendra Ningaraj. Link: https://bit.ly/2m9NaE1#OpenAccessJournals#KCNMA1#Gliomas pic.twitter.com/TpjdiNjPku
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Here it is, midnight on a Wednesday night/Thursday morning, and I’m all up in my feelings watching
#Diagnosis on Netflix. Seeing these families with kids with#KCNMA1 mutations meet for the first time
Hearing little Kamiyah say “he has them [paralysis episodes] too??” 

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Johnny is 1 of 37 known people WORLDWIDE to have the
#KCNMA1 mutation, it has taken 2 long years to get these answers which we had to go USA to get. We are looking for anyone in the UK that may have the same thing. Please RT and help my family and this brave little boy.
https://twitter.com/JohnnysStory3/status/1168270663846678528 …
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Get in touch with this parent if you know someone in the UK diagnosed with
#KCNMA1#BeJohnnyHappyhttps://twitter.com/JohnnysStory3/status/1168270663846678528 …
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Literally thought Johnny was the only person in the world, thank you
@Netflix and@LisaSandersmd for opening up the KCNMA1 world to us. Get his results in 10 days after 2 years of tests#KCNMA1#BeJohnnyhappy -
omigod it’s the BK channel!
@BKChannels#BK#KCNMA1 https://twitter.com/LucyRForrest/status/1040317216711946240 … -
A few weeks ago, Dr. Lisa Sanders shared information about a UDN participant in her
@nytimes column, Diagnosis. This week, she shares the genetic diagnosis: a single variant in the KCNMA1 gene. Full story: https://nyti.ms/2MnAPUt#RareDisease#KCNMA1 -
Anyone else out there with a
#KCNMA1 kiddo?
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