Terry Jo Bichell @TJBichell
Politics and Science, in equal measure. Rare disease biomarkers and outcomes specialist. DCDP Exec Comm at large. combinedbrain.org Nashville, TN Joined February 2015-
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FDA, NIH Cancel Rare Disease Day Event in Washington Amid Political Turmoil rarediseaseadvisor.com/news/amid-poli…
The IDDRC RFA's have just been cancelled. This is war on people with intellectual disabilities.
21 FEB: The RAPID Patients’ Day (ARPA-H-SN-25-127) event is now CANCELLED. The RAPID team will post a video and other information when possible. Questions sent to [email protected] will be answered as soon as the RAPID team is able to respond.
I felt so inspired writing this story about @TJBichell, who became a neuroscientist in her 50s because of her son's rare condition. My latest for @Nature: nature.com/articles/d4158…
I'm going to post this video every day until the election
Evaluation of the feasibility, diagnostic yield, and clinical utility of rapid genome sequencing in infantile epilepsy (Gene-STEPS): an international, multicentre, pilot cohort study dlvr.it/SttTbD
We’re using the power of partnership to collect biospecimens across rare neurodevelopmental disorders! Learn more about the @combinedbrain Biorepository Roadshow and our partnership here: bit.ly/3rrd0VJ #scn2a
Pearls & Oy-sters: Whole Genome Sequencing in Critically Ill Neurologic Patient Leads to Diagnosis with Treatment Implications dlvr.it/SsLPtK
1/2 New pre-print research from the team on #CDKL5 deficiency disorder (#CDD) & potential cardiovascular involvement! Using natural language processing, our team around @AlinaIvaniuk @team identified tachycardia as a significant association with CDD (OR 4.2). Interpretation is…
Very excited about this seminar open to the public and jointly sponsored by @combined_brain and 2 Vanderbilt departments. Please come to the talk and stay for the reception. @n_lorem #ASO #rare #cure I really think this is the wave of the future.
Make a human chain from Children's Hosp to state capitol Tues 5pm. @voices4saferTN safertn.org/events/#regist…
I am so proud to be from #Nashville. Our Councilmembers saved the day. Now, let's get #guncontrol. Council reappoints, Jones retakes oath of office tennessean.com/story/news/pol… via @Tennessean
Thank you to my Councilmember, @angienashville, for pledging to put @brotherjones_ back into the seat he was elected for. It is time for #guncontrol, thank you to the #TennesseeThree tennessean.com/story/news/pol…
“We called for you all to ban assault weapons, and you respond with an assault on democracy. That is why the nation is watching...” Jones said. Speaker Cameron Sexton wants to keep his guns and get rid of the uppity blacks who speak for all of us. @brotherjones_ @JustinPearsonIJ
Tennessee Democrats demand release of five young children removed from Black family from Georgia after a traffic stop in rural Tennessee. The THP on Thursday also denied our request for body- and dash-cam footage of the stop. tennesseelookout.com/2023/03/16/ten… @TNLookout
Days after Mila Jackson’s birth, her mother took Mila and her two brothers on what should have been a routine visit to the pediatrician. Instead, baby Mila was ripped away from her parents' loving care by Dallas CPS, and her father was arrested. 🧵
Honored to speak @EpilepsyFdn Research Roundtable is support of decentralized trials. @combined_brain
Zachariah Malachai performs "Girl Like You" wsmv.com/video/2023/03/… with @eddieslide and the Nashville Counts
Last not least, presented by Kim Goodspeed @utswnews who uses #icd10 codes every day treating #raredisease patients. @AANmember @AmerAcadPeds , watch out for @SLC6A1_Mom of @combined_brain who will tell you why kids like hers need @cdc granting a unique code to speed treatments
Now @curestxbp1 presented by @IngoHelbig . Please, @CDCgov what stops you from adding #icd10 codes for genetic disorders? Code for #AngelmanSyndrome found >3500 patients in 3yrs by @AmbitCare claims analysis. Rare codes help @combined_brain disorders. @AANmember @AmerAcadPeds

Effie Parks @OnceUponAGene
6K Followers 4K Following Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Luke Rosen @lukebrosen
2K Followers 424 Following Dad of two remarkable kids. Founder of https://t.co/GkrwXhfkoy & https://t.co/eWtcezWeJc. Works with families affected by neurological diseases & cancer. Firefighter. Baseball & hockey.
Ethan Perlstein bio/a... @eperlste
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Mike Graglia 🌻 @JMGraglia
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International SCN8A A... @SCN8AAlliance
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Helen Chen, PhD @helenc327
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Elizabeth Reynolds @EReynolds_
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Eddie Thatch @EddieThatch1718
25 Followers 461 Following Complacency Will Be The Death of Our Republic. Get involved, make a difference.
Orfeo Cabeza @OrfeoCabeza
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Sam Fenske @samf_7927
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Wayne Tunbridge @Gib1Wayne
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Terri Nathan @TerrivnNathan
31 Followers 1K Following Lured the best beauties from all US states 😘 Ready for private meetings Nudes in profile! Watching this https://t.co/NIDxF8tnis
Jason Curry @jsncurry
2K Followers 706 Following Co-founder at The SCN2A Foundation. Previously 4X agency builder (@wearecovalent, @centricdigital, @mutualmobile, @vaimo).
Sydney Hayes @hayes_sydney
34 Followers 93 Following PhD student at @UWMadison. Passionate about motor speech disorders and speech and language phenotyping. Michigan native 🤚
rareparenting @rareparenting
4K Followers 712 Following Mom-created resource for parents of children with #disabilities, #rarediseases and #specialneeds
David jr Wright @wrightdavidjr5
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Heather Meshell @meshell_heather
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FAMUAce @FAMUAce
262 Followers 921 Following Doctoral Student in Economics at Howard University. FAMU and MTSU alum | #TitanUp | #COYS | #BleedGreen | #EverybodyN
Meena Balasubramanian @MeenaBalasubra5
227 Followers 407 Following #Geneticist, #Clinical Academic @ShefUni_ClinMed, #Director of Research @sheffchildrens #Rare Disease Specialist @ShefUnihealth
Clement Chow @ClementYChow
16K Followers 5K Following henfluencer - geriatric millennial - #stopasianhate - don’t call me Clem - emotional eater™️- he/him- @chowlab
Ann sherry @Annsher92135773
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Effie Parks @OnceUponAGene
6K Followers 4K Following Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Luke Rosen @lukebrosen
2K Followers 424 Following Dad of two remarkable kids. Founder of https://t.co/GkrwXhfkoy & https://t.co/eWtcezWeJc. Works with families affected by neurological diseases & cancer. Firefighter. Baseball & hockey.
Ethan Perlstein bio/a... @eperlste
19K Followers 2K Following ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, ceo @endrarediseases $CURES, evo pharmacologist, mTOR worshipper $RAPTOR, cofounder of K&L
Ana Mingorance @CNSdrughunter
3K Followers 1K Following 🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others. @cnsdrughunter.bsky.social
The Notorious EEG (M.... @TheNotoriousEEG
10K Followers 2K Following Epileptologist/Head of Neurosciences @cookchildrens, I 💜 #HailState, buffalo wings, art, music & foremost Becky & my daughters. Views are mine, not my employer
KIF1A.ORG @KIF1A
1K Followers 590 Following We connect families affected by KIF1A and relentlessly work to accelerate research. We need to find treatment for this rare neurodegenerative disease. Fast.
SynGAP Research Fund ... @cureSYNGAP1
11K Followers 1K Following #SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 🎙
Mike Graglia 🌻 @JMGraglia
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Dennis Lal @LalDennis
3K Followers 324 Following Director of the Center for Neurogenetics; Associate Professor at UTH - Neurogenetics & Informatics - My opinions are my own & do not reflect my employer.
Peter Halliburton @phalliburton
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FamilieSCN2A @FamilieSCN2A
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329K Followers 420 Following Community Supported Local Weather, Nashville & Williamson Co ° @NashvilleScene Readers' Poll Best Twitter Acct '14-'24 ° 2016 & 2022 NWA W. J. Bennett Award
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Jonathan Pie @JonathanPieNews
567K Followers 2K Following Jonathan Pie is a news reporter https://t.co/0AQ0lNiSvD… WEBSITE: https://t.co/ete9uc4BML Enquiries to [email protected]
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Probably Genetic @ProbGenetic
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NEJM Evidence @NEJMEvidence
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Jackie Foster @HOPEforDLG4
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Hope for PDCD Foundat... @hopeforpdcd
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KdVS Foundation @KdVSFoundation
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AAP News @AAPNews
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American Academy of P... @AmerAcadPeds
136K Followers 505 Following Dedicated to the health, safety and well-being of infants, children, adolescents and young adults.
The Scn2a Foundation @scn2agene
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President Biden Archi... @POTUS46Archive
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NicoleZJohnson @NicoleZJohnson1
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Freakonomics @Freakonomics
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Needhi Bhalla 💅�... @NeedhiBhalla
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Boston Children's @BostonChildrens
65K Followers 3K Following The official Twitter feed for Boston Children's Hospital, providing you with all of our latest news and information. Disclaimer: https://t.co/b99Kgz6TpH
Rady Children's Hospi... @radychildrens
10K Followers 3K Following Now part of Rady Children’s Health, Rady Children’s Hospital San Diego is one of the nation’s top pediatric health care systems.
Begin_NGS @Begin_NGS
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RWJF @RWJF
149K Followers 6K Following Together let's build a future where health is no longer a privilege, but a right. Subscribe: https://t.co/VmcUXZS7qj Contact: https://t.co/5yfyyoNa4z
Jason B. Martin, MD @jasonbmartin
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Maddie Gillentine, Ph... @maddieag
473 Followers 1K Following Research Director @HNRNP_Family Former postdoc @uwgenome, PhD @bcmhouston, BA from @kcollege. #Neurodiversity #RareDisease
NeuroWoodworks @NeuroWoodworks
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First Steps @firststeps_ngs
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Geschwind Lab @ UCLA @GeschwindLab
1K Followers 64 Following Integrative #Genetics, #Genomics, and #Bioinformatics, with basic and clinical #Neuroscience, of neurologic and psychiatric disease. Tweets from lab members.
Darius Ebrahimi-Fakha... @DariusFakhari
911 Followers 640 Following 🇺🇸🇩🇪MD/PhD. Child Neurologist / Neuroscientist. Movement Disorders, Transl. Neuroscience, Cell Biology. @BostonChildrens @harvardmed. Opinions = own.
Child Neurology Socie... @ChildNeuroSoc
4K Followers 848 Following Child Neurology Society's official twitter account for members. At the #CNS, every member counts because every child counts. Retweets ≠ endorsement.
The Problem With Jon ... @TheProblem
234K Followers 3 Following All episodes of season 2 now streaming on @appletv
National Human Genome... @genome_gov
81K Followers 385 Following Funding research at the forefront of genomics to improve human health. Formerly the Human Genome Project. https://t.co/4hdQRFkFNU
Amgen 🧪🔬🧬 @Amgen
120K Followers 963 Following Amgen harnesses the best of biology and technology to fight the world’s toughest diseases. 🔗 Guidelines: https://t.co/IROHJVvFrV
Mike Porath @mikeporath
956 Followers 1K Following Created @themightysite to help empower and connect people facing disabilities & diseases. Formerly @nytimes @nbcnews @abc @aol