Lauren Perry @LaurenPerry80
#ColoradoNative☀️⛰️ | #RareDisease Advocate🦓 | #ISFJ✌️| #melomaniac 🎶 | #Xennial💾 | #SYNGAP1🧬 mom | Ops Mgr📃 at #SyngapResearchFund | @cureSYNGAP1💜💙💚 syngapresearchfund.org Colorado, USA Joined June 2020-
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What a sweet little lady 🥰
What a sweet little lady 🥰
#WarriorWednesday #SYNGAP1 Hope (4 years old) from Redding, California “Her favorite thing though, is riding in the car.” Read her story & see more photos at curesyngap1.org/syngap-warrior… #SRFWW no.200 #SYNGAP #SYNGAPResearchFund #CareAboutRare #PatientAdvocacy #Neurology #Genetics
Let's not wait and see; let's offer Exome Sequencing today! #RareDisease #GeneticTesting #CerebralPalsy #RareEpilepsies
Congratulations to Dr. Wiltrout, @IDreamofGenes & @BCH_PoduriLab for this analysis of @ciitizen data collected with & supported by SRF! Comprehensive phenotypes of patients with #SYNGAP1-related disorder reveals high rates of #epilepsy & #autism pubmed.ncbi.nlm.nih.gov/38470175/
Our friends started a coffee company! I am going into my day with my first @RareBrewCoffee . Excellent! Use the code SRF10 for 10% discount and support @cureSYNGAP1 while drinking very smooth and fresh coffee!
Great article about a child in Spain getting a SYNGAP1 diagnosis after 17 years. Her family and others have launched the EURAS project to study RASopathies, which is now backed by the EU. english.elpais.com/health/2024-02… @KatrienDeckers @el_pais
We need digital biomarkers for #SYNGAP1 trials. Drug repurposing is happening now and genetic therapies are in development. These tools will improve #clincialtrials for #ultrarare #raredisease. Thank you @aparitohealth for this collaboration! cc @FundacionDravet @JMGraglia
We need digital biomarkers for #SYNGAP1 trials. Drug repurposing is happening now and genetic therapies are in development. These tools will improve #clincialtrials for #ultrarare #raredisease. Thank you @aparitohealth for this collaboration! cc @FundacionDravet @JMGraglia
4Q23 #SYNGAPcensus = 🌏1,339 Details: Syngap.Fund/Census 🇺🇸385 🇬🇧122 🇩🇪112 🇫🇷94 🇨🇳93 🇳🇱49 🇪🇸🇮🇹41 🇨🇦39 🇦🇺37 🇵🇱33 🇷🇺🇧🇷26 🇰🇷21 🇦🇷14 🇳🇴🇸🇪13 🇨🇭🇩🇰12 🇧🇪11 🇨🇴10 🇵🇹9 🇮🇪🇨🇱8 🇹🇷🇮🇱🇯🇵🇸🇮7 🇫🇮6 🇲🇽🇷🇸5 🇪🇪🇧🇾🇦🇹🇮🇳🇪🇬🇺🇦4 🇨🇿🇩🇴🇭🇺🇬🇷🇦🇪3 🇭🇰🇷🇴🇸🇷🇲🇦🇲🇾🇧🇦🇸🇰🇸🇬2 🇹🇹🇩🇿🇻🇪🇭🇷🇽🇰🇸🇦🇲🇨🇶🇦🇳🇿🇦🇲🇮🇷1 If we missed you, let us…
The day before #AES2023, @cureSYNGAP1 had a focused conference that was great. I wrote my main learnings: - cool and scary new biology - now: drug repurposing - tomorrow: cures - the challenge of missense, could multiply patient # by 3-fold! - a real team draccon.com/dracaena-repor…
How can we thank you? ~ Dear Families and Supporters of SynGAP Research Fund, From families and friends to volunteers, supporters and donors, we know our SYNGAP1 community is full of incredible people making an impact on those living with SYNGAP1. SynGAP Research Fund is there…
🚨 Grant Alert🚨 SRF grants $105k to Dr. Frazier of @JohnCarrollU & @QuadBioInc/#AutismAnalytica to develop a #SYNGAP1 NET Tool for clinical trials. Others supporters of the NET are @ADNPkids, @MalanSyndrome, @autismspeaks & @SFARIautismnews..... . eurekalert.org/news-releases/…
Listen to the latest #SYNGAP10 episode with @JMGraglia! What is #SynGAPResearchFund doing to help #SYNGAP1 families this week? Subscribe to the #podcast at Syngap.fund/10 podbean.com/eas/pb-zdc2k-1… #SyngapConf #SYNGAP1
Time to contribute time energy information blood etc. to the #SYNGAP1 NHS at @ChildrensPhila in cooperation with @cureSYNGAP1 seeing Drs @IngoHelbig & @JillianLMcKee. Can’t wait. So far we have done car, TSA and boarding. Follow like this thread to see the trip. #CHOPorBust
One of the best #RareDisease fundraisers in history! It is truly fun to watch and it has raised serious 💴 to help #cureSYNGAP1! I encourage everyone to join in to enjoy the shenanigans (and throw a little 💰 their way!)
One of the best #RareDisease fundraisers in history! It is truly fun to watch and it has raised serious 💴 to help #cureSYNGAP1! I encourage everyone to join in to enjoy the shenanigans (and throw a little 💰 their way!)
“It’s already been a year?” It has & 2 weeks from today we’ll be in the final stretch of #CannonballForTheCure3 benefitting @cureSYNGAP1! Check the new SRF-branded @Ford Lightning! Shoutout @UFDTech & @SydneyStel for all the work they put into this! We’re going to @cureSYNGAP1!
Listen to the latest #SYNGAP10 episode with @JMGraglia! What is #SynGAPResearchFund doing to help #SYNGAP1 families this week? Subscribe to the #podcast at Syngap.fund/10 podbean.com/eas/pb-2z8sw-1…
It feels so good when people express their confidence in you. 🌠 Let's all go find someone to appreciate this week. 🫂
Listen to the latest #SYNGAP10 episode with @JMGraglia! What is #SynGAPResearchFund doing to help #SYNGAP1 families this week? Subscribe to the #podcast at Syngap.fund/10 podbean.com/eas/pb-8cxd5-1…
Mark your calendars. Cannonball for the Cure rides again. October 4-6. Let's @cureSYNGAP1!
One $61,222 #SYNGAP1-related intellectual disability grant available! Projects addressing any stage of pre-clinical to clinical development will be considered. For more info & to apply: bit.ly/MDBR2023RFA
One $61,222 #SYNGAP1-related intellectual disability grant available! Projects addressing any stage of pre-clinical to clinical development will be considered. For more info & to apply: bit.ly/MDBR2023RFA
SynGAP Research Fund .. @cureSYNGAP1
10K Followers 6K Following #SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 🎙
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Brain Ablaze @BrainAblaze
9K Followers 7K Following As people with Epilepsy, we raise awareness for Epilepsy and support anyone having seizures. | The Brain Ablaze Epilepsy Podcast | Blog | Support
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
Mike Graglia 🌻 @JMGraglia
7K Followers 3K Following CEO @cureSYNGAP1 🧬 Pod https://t.co/9jkDkMg5R8 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
Peter Halliburton @phalliburton
3K Followers 2K Following Raising $$ for #SYNGAP1 gene therapy 🧬 // @cureSYNGAP1 501(c)(3) Board // Carter & Presley’s Dad // @lindsayhalli 💜 // @cyberark Channel
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Sandy Smith @sandysmith317
3K Followers 2K Following #RareDisease #SYNGAP1 auntie. Working for a cure with @cureSyngap1. Healthcare IT professional. Micah 6:8 💜#epilepsy💙#autism💚#id
Ana Mingorance @CNSdrughunter
3K Followers 1K Following 🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others.
Becky Sansbury @AftrTheShock
2K Followers 2K Following Emotional Support Specialist | Rare Disease | Palliative Care | Author of "After the Shock" | former hospice chaplain | always a mom
Laura Palmer @LauraPalmer712
604 Followers 811 Following Language Arts teacher, parent of 3, lover of reading and running, epilepsy and rare disease mom.
Vicky Arteaga @VickyAArteaga
4K Followers 4K Following Directora para America Latina Fondo Syngap / Co-founder SHER (Sociedad Hispana Enfermedades Raras) / @cureSYNGAP1 Board #SYNGAP1 #RareDiseases
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Torie Robinson 🇺�.. @TorieRobinson10
6K Followers 2K Following @EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my own
Abby Turnwald (she/he.. @PedsGCAbby
927 Followers 1K Following Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, let’s talk about sibling health
TalkAboutIt.org @TalkAboutItorg
8K Followers 6K Following DESTROYING STIGMA for epilepsy & other conditions! Co-founder: @GregGrunberg. https://t.co/VlYrkdNHa5 PODCAST: https://t.co/vL91AKrO7L…
Corey Baysden @CoreyBaysden
6K Followers 5K Following #RareDisease mom to Saylor w/ #Syngap1 🧬 Director of Community Activation @cureSYNGAP1 🧠Working 2 find a cure for #epilepsy #autism #hypotonia #nonverbal #ID
Ashley S. Evans @SYNGAP1mom
5K Followers 5K Following Investor Francisco Partners Board @payscale @thisisgslate @litmos @SourceScrub @ZoomInfo Alum @OneCarlyle & @MorganStanley Founder @cureSYNGAP1 #SYNGAP1 🧬
Cathy Abbott @CathyAbbottLab
6K Followers 5K Following Professor, eEF1A2/neurological disorders. Tweeting about research, EDI, 3Rs (AWERB chair). She/her, views own. @cathyabbott.bsky.social
Beata Tarasiuk @beatasyngap1
1K Followers 1K Following SynGAP1 Mom @curesyngap1 #syngap1 volunteer at SRF
Litheaswod @litheaswod16370
0 Followers 182 Following
McTouhe @McTouhe8090
1 Followers 184 Following
Syngap Research Fund .. @SyngapAus
187 Followers 275 Following
Justine @kristi11224
5 Followers 1K Following
Beverly Anthony @BeverlyA21340
424 Followers 6K Following
Kayla Walker @KaylaWalke2120
53 Followers 2K Following
Chloe_Baker @baker_chlo93161
36 Followers 2K Following
Battle and Betrayal @NiedheimAUTHOR
126 Followers 397 Following
jamesjfink @jamesjfink
259 Followers 1K Following Girl Dad l Neuroscience l Drug Discovery l Synaptic Biology
_D_evil @Devil431748
36 Followers 2K Following
Virginie McNamar @VirginieMcNamar
34 Followers 79 Following Rare Disease advocate, Syngap1 mom, @CureSYNGAP1, Founder of Betterflye
Garvit Joshi @garvitjoshi01
113 Followers 501 Following @Amazon ML Summer School'23 || Python3 || Data Science
Richard Coca @RichardACoca
217 Followers 255 Following 1st year 🧠 PhD student @NeurosciBU, 👨🎓MS ‘23 @StanfordMed, BS ‘22 @Stanford
The_Goal_2028 @AlChino9888
420 Followers 4K Following The Art of War is Art of Life. Common share of the World Prosperity. Do it Now. Be Win-Win Again. Work Smarter Bit Harder. The Goal is DeFi_The_Fiat_by 2028.
Richard Brown MBE @_richardcbrown
645 Followers 2K Following ♿️ w/FA,🇮🇪/🇬🇧, Husband, Dad, Disability Activist, Serial Director, Trustee, Volunteer, Villa Fan, Writer, Bus & Pub Guy, Gamer, Geek
Shimmering @sataymmeas52517
5 Followers 741 Following Seja um arquiteto financeiro e construa uma fundação sólida para sua segurança e prosperidade futuras.
Brooklyn @slesayth91223
2 Followers 710 Following Conquistando o mundo do empreendedorismo digital e desvendando o sucesso online! 💼🌟
Dr Abayomi O Ojetayo .. @DrOjetayo
544 Followers 4K Following I am a Medical Doctor with several years of clinical experience, MSc Degree in International Public Health,and M.S. Degree in Clinical Research Administration.
Suthethe @suthethe34602
27 Followers 1K Following I live alone now and enjoy business, traveling, shopping, food and music. I have a calm personality and I hope we can be friends.
Touroa @Touroa195301
53 Followers 1K Following I live alone now and enjoy business, traveling, shopping, food and music. I have a calm personality and I hope we can be friends.
Cistiez @cistiez45508
27 Followers 1K Following I live alone now and enjoy business, traveling, shopping, food and music. I have a calm personality and I hope we can be friends.
The Med13L Foundation @Med13L_Fdn
69 Followers 646 Following Supporting MED13L families through awareness, research, and community. Connecting hearts and minds to overcome challenges. #NDD #Epilepsy #Autism #ID 🧬💙🧠
Melissa Fasol @melissafasol
156 Followers 534 Following Neuroscience PhD student 🧠 monogenic neurodevelopmental disorders & machine learning 🤖 @EdinburghUni @sidb_edinburgh, doodler https://t.co/JIlkfFJzJE
Patricia @Patrici66221665
2K Followers 4K Following Welcome to my page 😊 I like marketing and sales, especially vintage items 🤗 Shipping worldwide. Thanks for visiting 😘
John Brimsek @JohnBrimsek
8 Followers 103 Following
Natasha @harvey16natasha
186 Followers 3K Following
Jason moamo @moamo_jaso17828
34 Followers 137 Following
Alex Davis @AlexDavis182933
262 Followers 658 Following Honesty..... The greatest glory in living lies not in never failing, but in rising every time we fail.
Clara @claraeubanks76
184 Followers 3K Following
Vindiesel @VindieselMark88
40 Followers 310 Following An American 🇺🇸 actor and also a filmmaker/ singer 👩🎤, feel free to have a chat with me when am less busy
Brent Warner @iambrentwarner
227 Followers 780 Following Top 20 Under 40 in Biotech. CEO @ Protego Biopharma. Passion for drug development and patients. Views are my own.
Jessica B @Jessilepsy_23_
73 Followers 251 Following Former account for @epsijessie20 !! I have Epilepsy and Autism. Epilepsy does not define me !! 💜💜
Jacquelyne Kancir @syngapmom
41 Followers 46 Following ||| Brain Tumor Survivor 🧠 ||| Syngap1 Mom 🦓 ||| Disability Rights Advocate ⚖️ ||| Business Owner 🏷️ |||
Diana @diana88richards
213 Followers 3K Following
Eric Underbakke @un_eric
108 Followers 247 Following Associate Professor at Iowa State University Roy J. Carver Department of Biochemistry, Biophysics, and Molecular Biology (he/him)
Clement Chow @ClementYChow
17K Followers 5K Following henfluencer - geriatric millennial - #stopasianhate - don’t call me Clem - emotional eater™️- he/him- @chowlab
Alex @Alex23088283
128 Followers 339 Following
Fboy @Fboy524
370 Followers 5K Following I smile all the time so that nohody knows how Broken I'm inside. 😊😅
Jennifer @plottjennifer86
253 Followers 3K Following
Boost My Plays Now �.. @BeatBolster_
453 Followers 3K Following 🔥Real Promo Without Costs 🎸Millions of Potential Fans ❤️Youtube, Spotify, Soundcloud Claim Your Free Trial ➡️ https://t.co/FNPEr1wsv9
mvvenkataraman @mvvenkataraman
2K Followers 659 Following Patted Me- Tony Blair J Howard Obama P Martin A Merkel Norway King Pope Benedict Swedish Academy Gordon Brown J Socrates H Clark None Fueled Cruel Ukraine War!
William Michael @WilliamMic79826
277 Followers 1K Following
SynGAP Research Fund .. @cureSYNGAP1
10K Followers 6K Following #SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 🎙
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Brain Ablaze @BrainAblaze
9K Followers 7K Following As people with Epilepsy, we raise awareness for Epilepsy and support anyone having seizures. | The Brain Ablaze Epilepsy Podcast | Blog | Support
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
Mike Graglia 🌻 @JMGraglia
7K Followers 3K Following CEO @cureSYNGAP1 🧬 Pod https://t.co/9jkDkMg5R8 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
Peter Halliburton @phalliburton
3K Followers 2K Following Raising $$ for #SYNGAP1 gene therapy 🧬 // @cureSYNGAP1 501(c)(3) Board // Carter & Presley’s Dad // @lindsayhalli 💜 // @cyberark Channel
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Sandy Smith @sandysmith317
3K Followers 2K Following #RareDisease #SYNGAP1 auntie. Working for a cure with @cureSyngap1. Healthcare IT professional. Micah 6:8 💜#epilepsy💙#autism💚#id
Ana Mingorance @CNSdrughunter
3K Followers 1K Following 🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others.
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Ingo Helbig @IngoHelbig
3K Followers 349 Following Child Neurologist, epilepsy genetics researcher, blogger
American Epilepsy Soc.. @AmEpilepsySoc
14K Followers 721 Following Official account for American Epilepsy Society. We support research + education for professionals working towards a world without epilepsy. RTs ≠ endorsements.
Becky Sansbury @AftrTheShock
2K Followers 2K Following Emotional Support Specialist | Rare Disease | Palliative Care | Author of "After the Shock" | former hospice chaplain | always a mom
Laura Palmer @LauraPalmer712
604 Followers 811 Following Language Arts teacher, parent of 3, lover of reading and running, epilepsy and rare disease mom.
Vicky Arteaga @VickyAArteaga
4K Followers 4K Following Directora para America Latina Fondo Syngap / Co-founder SHER (Sociedad Hispana Enfermedades Raras) / @cureSYNGAP1 Board #SYNGAP1 #RareDiseases
Stoke Therapeutics @StokeTx
1K Followers 175 Following Stoke Therapeutics is addressing the underlying cause of severe diseases by upregulating protein expression with RNA-based medicines.
Ethan Perlstein @eperlste
17K Followers 2K Following ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, solo vc @AngelList, evo pharmacologist, mTOR worshipper, HODLer since '14, cofounder of Kai & Luca, bio/acc
Dennis Lal @LalDennis
3K Followers 329 Following Director of the Center for Neurogenetics; Associate Professor at UTH - Neurogenetics & Informatics - My opinions are my own & do not reflect my employer.
Torie Robinson 🇺�.. @TorieRobinson10
6K Followers 2K Following @EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my own
Corey Baysden @CoreyBaysden
6K Followers 5K Following #RareDisease mom to Saylor w/ #Syngap1 🧬 Director of Community Activation @cureSYNGAP1 🧠Working 2 find a cure for #epilepsy #autism #hypotonia #nonverbal #ID
Noah Kahan @NoahKahan
300K Followers 441 Following Love tweeting and receiving tweets // Stick Season (Forever) out now
Melissa Fasol @melissafasol
156 Followers 534 Following Neuroscience PhD student 🧠 monogenic neurodevelopmental disorders & machine learning 🤖 @EdinburghUni @sidb_edinburgh, doodler https://t.co/JIlkfFJzJE
bryan dickinson @chembioBryan
6K Followers 1K Following chemical/synthetic biologist but generally motivated by making molecules that do stuff, dad, @uchicago professor of chemistry
Thomas Spencer @Papa_Spence
166 Followers 299 Following
Gary Peterson 🇺�.. @GaryPetersonUSA
57K Followers 333 Following Patriot. Bible Reader. Mall Santa. I like WOMEN! Bass player for our church band Shifty Nelson & The Dixieland Scooters, who puts America First.
Dr. Marc Schaffer @tsdDrMarc
344 Followers 106 Following Proud Superintendent of the Thompson School District.
Eric Underbakke @un_eric
108 Followers 247 Following Associate Professor at Iowa State University Roy J. Carver Department of Biochemistry, Biophysics, and Molecular Biology (he/him)
Clement Chow @ClementYChow
17K Followers 5K Following henfluencer - geriatric millennial - #stopasianhate - don’t call me Clem - emotional eater™️- he/him- @chowlab
Jillian McKee @JillianLMcKee
226 Followers 204 Following child neurologist | epilepsy neurogenetics | digital health | machine learning/AI enthusiast | physician mom | @ChildrensPhila 🇨🇦🇺🇸
Gemma Carvill, PhD @CarvillLab
1K Followers 646 Following rare disease geneticist | epilepsy | epigenetics | iPSCs | mentor & genetics MedEd | immigrant | tweets about science, lab fun & occasionally our tiny hooman
Syngap1_Polska @Syngap1_Polska
14 Followers 16 Following Szerzenie informacji i zwiększanie świadomości na temat ultrarzadkiej mutacji Syngap1
Andy P ⭐️ @AndyPearceMusic
554 Followers 577 Following Technologist, musician and family man who likes to share ideas, opionions, and the occassional bad pun! …. oh and cmon you Blues! #KTBFFH #cfc #ChelseaFC
Governor Jared Polis @GovofCO
175K Followers 1K Following Governor of Colorado. Fighting for affordable health care, better education, an economy that works for everyone, and protecting our Colorado way of life.
Annie Vadlamudi @anniesnyder05
21 Followers 59 Following Unwavering Advocate. Behind the scenes ninja.
Yoichi Araki @yoichi_araki
215 Followers 303 Following A neuroscientist at Johns Hopkins. Interested in Molecular mechanisms of synaptic plasticity and how its disturbance leads to neurodevelopmental disorders.
Liam Gallagher @liamgallagher
3.7M Followers 0 Following RNR STAR GODLIKE RASTA ICON LEGEND BIBLICAL OMNIPRESENT PROPHET SPIRITUAL MAJESTICAL CELESTIAL OPTIMYSTIC BUDDHIST JEDI APPROACHABLE ZEN LOVER HUMBLE 🐝
Autism Wisdom by Don @AutismWisdom
7K Followers 2K Following Father of 3, husband, lawyer, champion for children with disabilities, runner, host of own birthday parties, friend of many, the older I get, the faster I was!
Carl C. Crowley @carlccrowley
314 Followers 421 Following Father. #girldad Husband. Financial Advisor. Chartered SRI Counselor/CSRIC. Miami Dolphins fanatic! #FinsUp Love Disney World Phillies #NeverTrump #FormerGOP
Rezident Weevil @RezidentWeevil
17 Followers 145 Following
JoeyLynn Nolan @NolanJoeylynn
80 Followers 154 Following Tbc1d24 Foundation, Rare Epilepsy Advocate, Respiratory Therapist, Research Coordinator, Mama, Wife and Bereaved Mother to Joey 🦘💜
Alfredo Gonzalez-Suls.. @SulserGonzalez
755 Followers 809 Following Neuroscientist researching epilepsy
GNAO1 España @Gnao1Espana
262 Followers 568 Following ONG de familias por la investigación de mutaciones en GNAO1. #Epilepsy #Movementdisorder. 💙💜👩🏻🔬👨🔬🤞🏾🤞
Shridhar Parthasarath.. @shridparth
91 Followers 138 Following Bioinformatics/data science @IngoHelbig lab @CHOPDBHi - @TCNJ ‘21
The Real Eric Moulton @etmoulton
15 Followers 43 Following
Prof. Toshi Yokota Ph.. @ToshifumiYokota
5K Followers 5K Following Garrett Cumming @MD_Canada Chair&Prof #Antisense #RNA #CRISPR #RareDiseases #Muscle #Bone #Neurology Trained @UTokyo_News @NCNP_pr @ImperialMed @ChildrensNatl
SMABEYOND @SMABEYOND
365 Followers 561 Following SMABEYOND – a Marie Sklodowska-Curie Innovative Training Network for research on peripheral organs in Spinal Muscular Atrophy (SMA) funded by the EU.
Lo Myrick @lomyrick
169 Followers 485 Following 💥 Game changer 🏆 Peak Performance + Mental Skills Coach, Speaker, Consultant - I help Athletes + Businesses achieve their goals and prevent burnout. Info👇
bluesky @bluesky
310K Followers 1 Following 🌐💬💙 From platforms to protocols. Sign up for Bluesky (no invite code required): https://t.co/rC9PCGgoL5
Elle Sanderson @ElleAdvocates
8 Followers 2 Following I am a non-attorney special education advocate.
Joshua Ryan Smith, MD @Joshua_RSmith
970 Followers 2K Following Vanderbilt Psychiatrist: Neurodevelopmental neurotherapeutics, ECT, Clinical Research, Catatonia, Advocacy, and Med Ed. Opinions are my own.
Helen Willsey @goodfrognosis
943 Followers 1K Following Using frogs to dissect psychiatric disorders (she/her)
Lukas Lange @thisislukasl
367 Followers 921 Following CEO & Co-Founder @ProbGenetic | @ycombinator alumni | Genetics PhD from @UniofOxford | @rhodes_trust scholar | he/him/his
Kristin Faulder @kparran
419 Followers 968 Following Communications strategist. Thinker. Lifelong learner. @NPR junkie. Passion runneth over.
Erynn @erynnkerrigan
263 Followers 3K Following Mom and PR professional. Reach out, I love new friends!
Maple Leaf Hockey @MapleLeafHockey
96 Followers 171 Following
🌜🤷♂️ �.. @raoulvilla
5K Followers 3K Following Husband father of 4. Wu Tang name is Tha Nappa. Parody, not a real moon. As seen on https://t.co/9fhkEMkr1v https://t.co/1vrml28KE3 the weekly church bulletin
Pretend Podcast @PretendPod
3K Followers 2K Following PRETEND #truecrime podcast about con artists. + Host @criminalcon & @ponziplaybook | Keynote Speaker | TikTok+IG @pretendpod 👇🏼
GAVIN ROSSDALE @GavinRossdale
403K Followers 10K Following English dreaming | @bushofficial | https://t.co/TN8WbNiYX9
Julie Xian @JulieXXian
190 Followers 211 Following MD-PhD student, M1 @HopkinsMDPhD | Computational researcher, @IngoHelbig lab 🧠 @ChildrensPhila | @Penn ‘22
Fillmore Auditorium @FillmoreDEN
6K Followers 478 Following Follow us for concert announcements, photos and more at Denver's Fillmore Auditorium! #FillmoreDEN
Heather Burke @heather_burke2
506 Followers 349 Following public information officer, #Denver, mother, wife, all around awesome 😎
Kathleen @kathleen_cabrer
1K Followers 3K Following
Dr.Mohamed Hanafy @DrMohamedHanaf3
205 Followers 1K Following Neurology consultant, lecturer of neurology , faculty of medicine, zagazig university, Egypt.
Jacob Vorstman 🇺�.. @Jacob_Vorstman
1K Followers 1K Following Father of four, husband of one. Child psychiatrist & researcher genetics & development, autism, schizophrenia, 22q11DS. Hospital for Sick Children Toronto
laClemen @laClemen1
865 Followers 749 Following Física y madre emigrada a Alemania. Conviviendo con un Kumquat mutante: #ACTL6B. https://t.co/i59snN3EWL
Kcna2 (Encefalopatía.. @KCNA2_gen
74 Followers 383 Following#WarriorWednesday SYNGAP1 Kaia (3 years old) from Fairfield, CA“Her laughter and smile and ability to connect gives us life.” Read her story & see more photos at curesyngap1.org/syngap-warrior… #SRFWW no.202 #SYNGAP #epilepsyawareness #autismawareness #rarediseaseresearch #CareAboutRare
“He looks like he doesn’t shower” sweetie I don’t just look like it
#WarriorWednesday SYNGAP1 Phoebe (3 years old) from Washington, DC “We couldn’t imagine a brighter light than our girl who fights so hard every day of her life.” Read her story & see more photos at curesyngap1.org/syngap-warrior… #SRFWW no.201 #SYNGAP #CareAboutRare #PatientAdvocacy
Have you saved the date yet? For the 4th year, we're shining a light of hope as we honor Caren Leib, age 67, and all those diagnosed with #SYNGAP1. #SaveTheDate #CLG4 Details - Syngap.Fund/CLG4 Past years' videos - Syngap.Fund/CLG
I understand everyone's frustration with Xcel's decision to cut power this weekend but please use patience and kindness to frontline Utility workers working to RESTORE power to the community. They weren't the ones who made the decision. They're just trying to restore power and…
Companies: Please show real pics of our #RareDisease kids. Not a happy/laughing/rolling in the grass fam clearly hitting your DEI ✔. Most of our kids can't even do the pincher grasp in those pics of kids holding toys. Show real rare kids. We need to 👀 them and so does the 🌎
Listen to the latest #SYNGAP10 episode with @JMGraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at Syngap.fund/10 podbean.com/eas/pb-y45ev-1… #SYNGAP1
Kicking it with some old New York friends. @sesamestreet that was one of the best days of my life
#WarriorWednesday #SYNGAP1 Hope (4 years old) from Redding, California “Her favorite thing though, is riding in the car.” Read her story & see more photos at curesyngap1.org/syngap-warrior… #SRFWW no.200 #SYNGAP #SYNGAPResearchFund #CareAboutRare #PatientAdvocacy #Neurology #Genetics
Listen to the latest #SYNGAP10 episode with @JMGraglia! What is #SynGAPResearchFund doing to help #SYNGAP1 families this week? Subscribe to the #podcast at podbean.com/eas/pb-a6qhp-1… #SYNGAP1
Let's not wait and see; let's offer Exome Sequencing today! #RareDisease #GeneticTesting #CerebralPalsy #RareEpilepsies
Listen to the latest #SYNGAP10 episode with @JMGraglia! What is #SynGAPResearchFund doing to help #SYNGAP1 families this week? Subscribe to the #podcast at podbean.com/eas/pb-zr7un-1… #SYNGAP1
Congratulations to Dr. Wiltrout, @IDreamofGenes & @BCH_PoduriLab for this analysis of @ciitizen data collected with & supported by SRF! Comprehensive phenotypes of patients with #SYNGAP1-related disorder reveals high rates of #epilepsy & #autism pubmed.ncbi.nlm.nih.gov/38470175/
Our friends started a coffee company! I am going into my day with my first @RareBrewCoffee . Excellent! Use the code SRF10 for 10% discount and support @cureSYNGAP1 while drinking very smooth and fresh coffee!
I know it’s part of it and it comes with the territory but there’s something so genuinely unsettling about a bunch of grown men waiting at baggage claim to harass me for signatures so they can make money on eBay or whatever and then chasing me when I politely tell them no
Someone needs to study this man and his rizz
Our guest - SRF's lead advocate, Jackie Kancir, talks about advocating for changes to education & health systems, behavioral challenges with #SYNGAP1, & Jadyne's optimism! Syngap.Fund/Stories #SYNGAP1StoriesJadyne #Epilepsy 💜 #Autism 💙 #IntellectualDisability 💚 #Advocacy
Listen to the latest #SYNGAP10 episode with @JMGraglia! What is #SynGAPResearchFund doing to help #SYNGAP1 families this week? Subscribe to the #podcast at podbean.com/eas/pb-5dger-1… #SYNGAP1
Will never forget being on a flight and the flight attendant brought a tray of drinks and I said “what are the options” and the guy said “to take one or not to take one” and I went silent for 48 hours
Last but not least 🦓☕ I'll pour a cuppa before I head to my state capitol tomorrow. Thanks, pals! @SydneyStel @UFDTech @cureSYNGAP1
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