TSA (@TimothySyndrome) profile picture

TSA

@TimothySyndrome

Timothy Syndrome Alliance is dedicated to research, education and supporting families affected by #LongQT 8 and #TimothySyndrome

sads.org/timothysyndome
Joined October 2017
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When every second counts, be prepared to save a life. Call 911, start CPR, and use an AED. SCA is the leading cause of death among young athletes. #CallPushShock #SCAAwarenessMonth
Image from FIA | Inherited Arrhythmias (@fiacardiac)
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We are officially international!!! eventbrite.co.uk/e/timothy-s…
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The gangs all here!
Image from TSA (@TimothySyndrome)
YES!! To the point where i proposed and spoke on a #patient only session at @BIOConvention about two years ago. Standing room only. Motivation stemmed from hearing, "#Patients want or need..." on repeat. We have voices. We can talk. #PatientLeaders
Social Health Network (@socialhealthnet) profile pictureSocial Health Network@socialhealthnet5 Oct 2019
Do you believe #PatientLeaders need to be included at healthcare conferences? Join the #WEGOHealthChat Tuesday at 1 pm ET to discuss the importance of bringing patients to the table and involving Patient Leaders in industry conferences and events.
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We're not all work this year. Sessions resume at 9am...but tonight we have Casino Night and dance! #SADS19
Image from TSA (@TimothySyndrome)
Image from TSA (@TimothySyndrome)
Intracellular calcium flow difference between a normal cell and a Timothy Syndrome affected cell. #channelopathy #ionchannel
Image from TSA (@TimothySyndrome)
Discussing new research on mouse models and hypoglycemia in TS patients. "Hypoglycemia is a massive issue in Timothy Syndrome" "Patients were actually dying from the hypoglycemia" -Geoffrey Pitt, MD #hypoglycemia #channelopathy #SADS19 #timothysyndrome
Image from TSA (@TimothySyndrome)
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We have offical @NIH research happening! #SADS19 #RareDisease #channelopathy
Image from TSA (@TimothySyndrome)
"You share about 50% of your genes with the worm...and don't be insulted...that's a compliment" - @wormsrule3 #SADS19 #Genetics #RareDisease #research
One of the most anticipated sessions of the weekend had begun! Thank you @wormsrule3 for sharing your work with us. #NIH #RareDisease #TimothySyndrome #SADS19
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#PLOSCompBio: Arrhythmia mechanisms and spontaneous calcium release: Bi-directional coupling between re-entra ... dx.plos.org/10.1371/journal.…
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Katherine Timothy: We never find mosacism in blood. We need to look at other testing to find mosaics. #RareDisease #genetics #TimothySyndrome #SADS19 #ionchannels
Genetic Counselor Heather McCloud talks about genetics and why each Timothy Syndrome child is so unique. #SADS19 #TimothySyndrome #ionchannels #RareDisease #genetics
Today is #WorldHeartDay. Learn more about how to get involved in raising awareness of SADS conditions and preventing cardiac arrest in the young at StopSADS.org. #KnowShareLive #SADSawareness
Image from FIA | Inherited Arrhythmias (@fiacardiac)
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Dr. Carson, one of the first doctors to treat Timothy Syndrome patients talks about the early years. What a long way we have come! #SADS19 #TimothySyndrome #ionchannel
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Our friends at @BeyondtheDx unveiled a new painting.....Alanna by Law Blank prior to last night's reception #SADS19
Image from TSA (@TimothySyndrome)
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We can't wait!!!
FIA | Inherited Arrhythmias (@fiacardiac) profile pictureFIA | Inherited Arrhythmias@fiacardiac5 Oct 2019
Save the date for next year's conference in Houston! #SADS19
Image from FIA | Inherited Arrhythmias (@fiacardiac)
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Director of Development Jan Schiller discussing how our donors allow us to serve our mission of supporting families and saving lives. To become a sustainer, go here: bit.ly/2AKVo9L #SADS19
Image from FIA | Inherited Arrhythmias (@fiacardiac)
Image from FIA | Inherited Arrhythmias (@fiacardiac)
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"The only hope patients have, even for those receiving advanced treatments, is medical innovation" - J. Wilcox @PatientsRising #waroncancer
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