TSA

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

[SADS Foundation @SADSFoundation]

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

[TSA @TimothySyndrome]

We are officially international!!!
https://t.co/EPQkVyCZK1

[TSA @TimothySyndrome]

The gangs all here!

[Liz Kennerley #LongCOVID #RareDisease #WomensHealt @LifeAccrdingLiz]

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

[TSA @TimothySyndrome]

We're not all work this year. Sessions resume at 9am...but tonight we have Casino Night and dance!
#SADS19

[TSA @TimothySyndrome]

Intracellular calcium flow difference between a normal cell and a Timothy Syndrome affected cell.
#channelopathy #ionchannel

[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

[TSA @TimothySyndrome]

We have offical @NIH research happening!
#SADS19 #RareDisease #channelopathy

[TSA @TimothySyndrome]

@NIH Undiagnosed Disease Program sites
#SADS19 #RareDisease #Undiagnosed #channelopathy

[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

[TSA @TimothySyndrome]

One of the most anticipated sessions of the weekend had begun!
Thank you @wormsrule3 for sharing your work with us.
#NIH #RareDisease #TimothySyndrome #SADS19

[Ion Channels @Leeds @IonChannelLeeds]

#PLOSCompBio: Arrhythmia mechanisms and spontaneous calcium release: Bi-directional coupling between re-entra ... https://t.co/bDEPi5cPrj

[TSA @TimothySyndrome]

Katherine Timothy:
We never find mosacism in blood.
We need to look at other testing to find mosaics.
#RareDisease #genetics #TimothySyndrome #SADS19 #ionchannels

[TSA @TimothySyndrome]

Genetic Counselor Heather McCloud talks about genetics and why each Timothy Syndrome child is so unique.
#SADS19 #TimothySyndrome #ionchannels #RareDisease #genetics

[SADS Foundation @SADSFoundation]

Today is #WorldHeartDay.
Learn more about how to get involved in raising awareness of SADS conditions and preventing cardiac arrest in the young at https://t.co/bHmKSxJm3W.
#KnowShareLive #SADSawareness

[TSA @TimothySyndrome]

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

[TSA @TimothySyndrome]

Our friends at @BeyondtheDx unveiled a new painting.....Alanna by Law Blank prior to last night's reception #SADS19

[TSA @TimothySyndrome]

We can't wait!!!

[SADS Foundation @SADSFoundation]

Save the date for next year's conference in Houston! #SADS19

[SADS Foundation @SADSFoundation]

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: https://t.co/ZfSk3x0fwq
#SADS19