SYNGAP1 Global Network (SGN) @SyngapNetwork
Global #SYNGAP1 @cureSYNGAP1 🇺🇸🇬🇧🇪🇺 @Syngap1A 🇦🇷 @SyngapAus 🇦🇺 @OSyngap1 🇨🇦🇫🇷 @syngap1Germany 🇩🇪🇦🇹@syngap1italia 🇮🇹 & 🇪🇸🇮🇳🇯🇵🇸🇪🇨🇭 SyngapGlobal.net Planet Earth Joined April 2020-
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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-8rsrb-1… #SYNGAP1
#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
#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
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
How many people have SYNGAP1? 1Q24 = 🌏1,400 Syngap.Fund/Census 🇺🇸401 🇬🇧125 🇩🇪114 🇨🇳99 🇫🇷95 🇳🇱50 🇮🇹48 🇪🇸47 🇨🇦40 🇦🇺38 🇵🇱35 🇷🇺30 🇧🇷28 🇰🇷21 🇦🇷🇨🇭14 🇳🇴🇸🇪13 🇩🇰12 🇧🇪11 🇨🇴10 🇵🇹🇯🇵9 🇮🇪🇨🇱🇮🇱8 🇹🇷🇸🇮7 🇫🇮6 🇲🇽🇷🇸5 🇪🇪🇧🇾🇦🇹🇮🇳🇪🇬🇺🇦🇨🇿4 🇩🇴🇭🇺🇬🇷🇦🇪🇷🇴3 🇭🇰🇸🇷🇲🇦🇲🇾🇧🇦🇸🇰🇸🇬2 🇹🇹🇩🇿🇻🇪🇭🇷🇽🇰🇸🇦🇲🇨🇶🇦🇳🇿🇦🇲🇮🇷🇵🇪🇮🇸1
#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
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
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!
#WarriorWednesday #SYNGAP1 Jack (4 years old) from Sandpoint, Idaho “Loves being outside and jumping on the trampoline, swinging on swings and even riding his sister’s horse with her” Read his story & see more photos @ curesyngap1.org/syngap-warrior… #SRFWW no.199 #SYNGAP #CareAboutRare
We wish we could deliver everyone's coffee in a matching zebra truck, but allow this to suffice for now....
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
How does this #podcast🎙️en #espanol only have 11 reviews? If you have a iPhone, care about #RareDisease / #SYNGAP1 & BELIVE that we need to reach out to the Hispanic patient community, then you need to click below & give a 5️⃣⭐️review! podcasts.apple.com/us/podcast/caf… @cureSYNGAP1🧬
Life has a way of leading us to unexpected places and experiences, such as advocating for causes we never imagined we would. Here we are, connecting with and being inspired by countless individuals in the Rare Disease community. @cureSYNGAP1 @EveryLifeOrg @curedravet
#WarriorWednesday #SYNGAP1 Igor (20 months) from Turza Śląska Poland “Everyday he tries with determination to catch up to his peers.” Read his story & see more photos at curesyngap1.org/syngap-warrior… #SRFWW no.198 #SYNGAP #epilepsyawareness #autismawareness #rarediseaseresearch
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-hns9d-1… #SYNGAP1
We have 914 subscribers on @YouTube, we'd love to get to 1k, asap. Have you subscribed? Could you please? Family videos, podcasts, webinars, conferences. All there. SUBSCRIBE TO SRFtube! youtube.com/@CureSYNGAP1
I hope some of our @cureSYNGAP1 friends are heading to this in #CapeTown later this year! @IngoHelbig @JillianLMcKee @SarahRuggieroGC @NolanJoeylynn @TheNotoriousEEG @hcmefford @dretico @VickyAArteaga @Prosser_Lab @CarvillLab @ClementYChow @jamesclementjnc @DrZachGrinspan
I hope some of our @cureSYNGAP1 friends are heading to this in #CapeTown later this year! @IngoHelbig @JillianLMcKee @SarahRuggieroGC @NolanJoeylynn @TheNotoriousEEG @hcmefford @dretico @VickyAArteaga @Prosser_Lab @CarvillLab @ClementYChow @jamesclementjnc @DrZachGrinspan https://t.co/EGTXLoXzUI
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
#Syngap1 opportunity in EU 🇪🇺🇫🇮 @UniTurku @MJC_lab! cc @stromgaardlab @PWCentre @cureSYNGAP1 @SyngapNetwork
#Syngap1 opportunity in EU 🇪🇺🇫🇮 @UniTurku @MJC_lab! cc @stromgaardlab @PWCentre @cureSYNGAP1 @SyngapNetwork
SynGAP Research Fund .. @cureSYNGAP1
10K Followers 5K 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
7K Followers 3K Following CEO @cureSYNGAP1 🧬 Pod https://t.co/9jkDkMg5R8 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
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 🦓
Ana Mingorance @CNSdrughunter
3K Followers 1K Following 🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others.
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
Torie Robinson 🇺�.. @TorieRobinson10
6K Followers 2K Following @EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my own
Prof Ingrid Scheffer @ingridscheffer
3K Followers 657 Following Laureate Professor of Paediatric Neurology at @unimelb, @theflorey, @austin_health, @RCHMelbourne. Research epilepsy, classn, genetics, speech & mentorship
Peter Halliburton @phalliburton
3K Followers 2K Following Raising $$ for #SYNGAP1 gene therapy 🧬 // @cureSYNGAP1 501(c)(3) Board // Carter & Presley’s Dad // @lindsayhalli 💜 // @cyberark Channel
Dr. Heather Mefford @hcmefford
3K Followers 948 Following Physician, scientist, mom, wife #genetics #epilepsy #pediatrics #raredisease @StJude @StJudeResearch formerly @UWMedicine
AGE Program - Adult G.. @DrDaniAndrade
2K Followers 713 Following Professor of Neurology @UofT. Director, #AdultGeneticEpilepsy Program @UHN. Chair of @IlaeWeb #TransitionTaskForce #EpilepsyGenetics #neurotwitter
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
FamilieSCN2A @FamilieSCN2A
2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.
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
Madeleine Oudin @MadeleineOudin
5K Followers 2K Following Associate Professor at Tufts University, cancer and epilepsy researcher, fierce advocate for diversity and inclusion, mom of a daughter with SCN8A epilepsy
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
Sydney Stelmaszek @SydneyStel
510 Followers 661 Following Supporting African leaders with @LifeChildAfrica to restore communities for generational change - Rare disease mom to Emmitt @cureSYNGAP1 - Wife to @UFDTech
Laura Palmer @LauraPalmer712
608 Followers 811 Following Language Arts teacher, parent of 3, lover of reading and running, epilepsy and rare disease mom.
BarabanLab @BarabanLab
3K Followers 3K Following Translational epilepsy research in an academic setting | neuroscience, drug discovery, zebrafish, electrophysiology, cell therapy, precision medicine and more
Ángel Aledo-Serrano @AledoNeuro
7K Followers 1K Following Neurologist🧠 Epileptologist, director of @Vithas @SynaptiaMadrid Institute & Epilepsy Center - Neurogenetics🧬 @SENeurologia - #FND - [email protected]
Star Hupka @HupkaSta
67 Followers 5K Following
Shakira Artiles @artil_shaki
0 Followers 162 Following
Eddie Vida @eddi_vida
30 Followers 5K Following
Shena Mcilvaine @McilvaineS26012
86 Followers 5K Following
Isla-rose Weingarten @Weingarten65377
93 Followers 5K Following
Edith Luangsingotha @luangsingo22198
99 Followers 5K Following
Rosia Ostermann @OstermannR53671
95 Followers 5K Following
AnahA @AnahitaAvalos
27 Followers 221 Following
Amber Olcus @AOlcus47143
97 Followers 5K Following
Mildred Smale @MildredSma99455
98 Followers 5K Following
Else Shellabarger @EShellabarge
74 Followers 5K Following
Kristen C. Duncan @kristencreed76
201 Followers 2K Following Mom of 3, #Autism, #DandyWalkersyndrome, #rescue-dogs ,#Advocate, #Countrymusic #specialneeds #inclusion
Shery Koenigs @SheKoenigs
43 Followers 5K Following
Yong Cicen @CicenYong35421
86 Followers 5K Following
Kylee Fayer @KyleeFayer68012
88 Followers 5K Following
Malaysia Wormley @MalaysiaWo48490
85 Followers 5K Following
Aaliyah Kobler @AaliyahKoble
72 Followers 5K Following
Millie-grace Kolts @GraceKolts89647
98 Followers 5K Following
Billie's Squishmallow @LynndaleDreamer
97 Followers 507 Following "You could stab me in the chest and I'd still apologize for getting blood on your clothes."
Isabel Widrig @IsabeWidr
62 Followers 5K Following
Harriett Silagy @HarriettSi20050
77 Followers 5K Following
Sallie Laakso @LaakSall
45 Followers 5K Following
Barbra Hanft @BarbraHanf84975
81 Followers 5K Following
Venus Nessmith @NessmitVen
71 Followers 5K Following
Naomi Utsey @UtsNaom
80 Followers 5K Following
Chassidy Kaschmitter @ChassidyK6910
64 Followers 5K Following
Silva Seppelt @seppe_sil
18 Followers 3K Following
Danette Charfauros @DanetteCha63442
84 Followers 5K Following
Natalia Hernander @nata_hernan
80 Followers 5K Following
Carly Bergey @BergeyCa
46 Followers 5K Following
Elle Shala @ShalaElle38585
49 Followers 5K Following
Becky John @trump_ivan76785
20 Followers 838 Following The second-born child of Donald Trump, the 45th president of the United States and his first wife .
Chanelle Kooker @ChanelleKo86250
75 Followers 5K Following
Qi Shu @QiShu153659
0 Followers 6 Following
Tatum Hempe @HempeHem
84 Followers 5K Following
Rose Gan @rose_gan29894
80 Followers 5K Following
Marlen Ramach @MarlenRama59316
79 Followers 5K Following
Margarita Craffey @MargaritaC44277
85 Followers 5K Following
Patricia Brookhart @BrookhPatric
73 Followers 5K Following
SynGAP Research Fund .. @cureSYNGAP1
10K Followers 5K 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
7K Followers 3K Following CEO @cureSYNGAP1 🧬 Pod https://t.co/9jkDkMg5R8 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
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 🦓
Ingo Helbig @IngoHelbig
3K Followers 349 Following Child Neurologist, epilepsy genetics researcher, blogger
Ana Mingorance @CNSdrughunter
3K Followers 1K Following 🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others.
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
Torie Robinson 🇺�.. @TorieRobinson10
6K Followers 2K Following @EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my own
American Epilepsy Soc.. @AmEpilepsySoc
14K Followers 722 Following Official account for American Epilepsy Society. We support research + education for professionals working towards a world without epilepsy. RTs ≠ endorsements.
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.
Prof Ingrid Scheffer @ingridscheffer
3K Followers 657 Following Laureate Professor of Paediatric Neurology at @unimelb, @theflorey, @austin_health, @RCHMelbourne. Research epilepsy, classn, genetics, speech & mentorship
Peter Halliburton @phalliburton
3K Followers 2K Following Raising $$ for #SYNGAP1 gene therapy 🧬 // @cureSYNGAP1 501(c)(3) Board // Carter & Presley’s Dad // @lindsayhalli 💜 // @cyberark Channel
Dr. Heather Mefford @hcmefford
3K Followers 948 Following Physician, scientist, mom, wife #genetics #epilepsy #pediatrics #raredisease @StJude @StJudeResearch formerly @UWMedicine
AGE Program - Adult G.. @DrDaniAndrade
2K Followers 713 Following Professor of Neurology @UofT. Director, #AdultGeneticEpilepsy Program @UHN. Chair of @IlaeWeb #TransitionTaskForce #EpilepsyGenetics #neurotwitter
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
FamilieSCN2A @FamilieSCN2A
2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.
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
Madeleine Oudin @MadeleineOudin
5K Followers 2K Following Associate Professor at Tufts University, cancer and epilepsy researcher, fierce advocate for diversity and inclusion, mom of a daughter with SCN8A epilepsy
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
Sydney Stelmaszek @SydneyStel
510 Followers 661 Following Supporting African leaders with @LifeChildAfrica to restore communities for generational change - Rare disease mom to Emmitt @cureSYNGAP1 - Wife to @UFDTech
Rare Brew Coffee @RareBrewCoffee
45 Followers 5 Following A coffee company committed to curing SYNGAP1 alongside our partner, SynGAP Research Fund @curesyngap1.
MC @Mariaco98
285 Followers 784 Following R1 Rhb👩🏻⚕️ 💉🫀🫁🧠💪🏻💊 Every day, every hour, turn the pain into power!
Dr Rajendra Baikady P.. @DBaikady
495 Followers 3K Following Editor-in-chief Discover Global Society |Palgrave Handbook of Global Social ProblemslPalgrave Handbook of Global Social Changel https://t.co/2iw5LfgdYV
Jason Mendelsohn @SupermanHPV
801 Followers 807 Following 54 year old HPV Oropharyngeal (Tonsil) Cancer Survivor, married 27 yrs - 3 kids, business owner & member of Executive Board for Head & Neck Cancer Alliance.
Dr Paco Torres @PacoTorresGtz
363 Followers 3K Following Mi codificación genética revela mi condición humana, mi conciencia me dicta que no cometa los errores de mi condición. Ejerciendo un arte milenario. Medico.
Arinola Tokunbo Popoo.. @arinola_popoola
482 Followers 5K Following I have the ability to express my desires. I am confident. I will not give up. I will continue to push I will continue to engage myself in consistent. Positive.
Erica A Schuyler, MD,.. @EricaSchuyler
4K Followers 878 Following #Neurology Program Director @UConnNeurology #MedEd leader #IMG advocate Associate Prof.🧠EEGer. Mom. Dancer 💃. she/her. 🏳️🌈 All views expressed are my own.
Francisco Olavarría .. @OlavarriaRamos
1K Followers 730 Following Hace 18 años mi padre sufrió un #Ictus y ahora trabajo en @Neuronrehab, como director comercial y atención a las personas. ¿Casualidad? Futuro Trabajador Social
Gemma Batayé Marmol @gbataye
266 Followers 385 Following Periodista. Em dedico al desenvolupament econòmic i la promoció de ciutats
Joseph BSN, RN @josephinscrubs
534 Followers 3K Following Advocate, loves to sing and in a colorful pursuit of a medical dream. Passionate about public health, policy, nsg and med 🏳️🌈
Rafael Perez Rodrigue.. @Raf_Perz
369 Followers 742 Following Epileptologist and Neurologist @MayoClinicHS via @mcg_neurology, squiggly EEG lines(Epilepsy and Neurophysiology)@emoryuniversity and tennis.🇩🇴@unibeenlinea
Subin Mathew @SubinMatthews
720 Followers 558 Following Neurointensivist/ ICU EEGer @UNMC. EEG fellow @Harvardmed @MGHNeurology, Neurocrit Care @Emoryneurology Neuro @cleveclinicfl
Carlos Carazo @CCarazo7
95 Followers 221 Following "Your time is limited, so don't waste it living someone else's life" S. Jobs ENT - head and neck surgeon
Karen Seidler @karenseidler
308 Followers 583 Following
Alon Kashanian @AlonKashanian
989 Followers 1K Following Neurosurgical Resident @NWHNeurosurgery @NorthwellHealth
Joydip Sinha @JoydipSinha89
60 Followers 623 Following Key Account Manager, IVF and Corporate Hospital Bussiness Channel, Universal Nutri Science
Jesy Davila @JessicaDavila82
354 Followers 5K Following Mujer Colombiana, Hija, Hermana, Madre, Esposa, emprendedora, Creyente de YHWH, Luchadora de los Derechos Humanos, La Fé, La Familia y el Medio Ambiente ☝️
Dr. Ashraf Al-Refaee @refaee_dr
228 Followers 4K Following
MedicoInquieto @medicoinquieto
8K Followers 1K Following Médico. Cerebro crítico. La capacidad de entender la ironía es una función mental.
Nooru khatri @nooru_khatri
79 Followers 102 Following
Lauren The Warrior @letsg0devs
1K Followers 314 Following You never know how strong you are, until being strong is your ONLY choice • here to inspire • NJD forever • #WarriorStrong • Follow me on IG: @ohheyits_lauren_
Luis de Unzaga 🇪�.. @LouisdeUnzaga
368 Followers 2K Following Precursor en el nacimiento de EEUU y en el liberalismo, cerebro de la ayuda a EEUU, creador del primer sistema educativo público bilingüe, introductor del dólar
Jaime Masjuan @MasjuanJaime
2K Followers 556 Following Jefe de Servicio de Neurologia Hospital Ramon y Cajal. Complejo Hospitalario Ruber Juan Bravo.
Mario Schneller @mschneller
687 Followers 2K Following Sys-DB Admin / JuniorDev / IT Courses Teacher / Support Agent / Radio DJ (https://t.co/zWZx0qegs2) / RadTrad Catholic
purplewarrior5.1 Lean.. @1Purplewarrior5
2K Followers 3K Following 47yrs old.. mom/ wife... artist I paint rocks.. believes in ghosts aliens and cryptids.. epilepsy warrior.. supports LGBTQIA community.
Will @willroyston12
71 Followers 516 Following
ISDA - International .. @ISDACongress
348 Followers 2K Following Come join us in Panama, 14 - 17 April 2024 for ONE city, TWO international meetings supporting TWO disciplines: #ISDA2024 and #SIBECS2024.
Carmen J. Leciñena @carjimle
306 Followers 459 Following
Juan Anaya Ojeda @Juanayaojeda
3K Followers 519 Following Neurofisioterapeuta y patrono de @fundaisse. Antropólogo. Dirijo el Máster Propio en Neurofisioterapia de @fundacionupo. Modero #NeuroPhysioClub✳️ @seneurofisio
🇺🇦I💜Summer N.. @oreochick801
1K Followers 2K Following Democrat•Supporter of Science•Banned book hoarder•Epileptic warrior Minorities need to actually matter to people more.
JS @AEPRN1993
72 Followers 452 Following
Dr. Jampieer - Medici.. @Jampieer
2K Followers 5K Following 💎Tips para Verse bien y Sentirse bien🤩 🩺Disfrutando la oportunidad de servirte💉✨ 🎓🇵🇪🇺🇸🇨🇴🇦🇷🇪🇸 👇🏻Citas👇🏼@verssemedicalspa
Michell Mc Lean @lean_michell
146 Followers 250 Following I'am easy going person and likes different things in life. Have a loving family that support me with my Epilepsy life style.
Antonio E. Arias @Tonymed2010
572 Followers 1K Following Médico Especialista en Informática Médica y Medicina Familiar Máster en Dirección Estratégica en Tecnología de la Información
Claudio Alejandro �.. @CAlejandroneuro
4K Followers 349 Following MD, MSc Neurólogo-Neurofisiologo Jefe Neurología Hospital Simón Bolívar Coordinador Red ACV HSB - Bogotá Cuando salvamos TEJIDO CEREBRAL salvamos TEJIDO SOCIAL
Ahmed Omran @Ahezzom90
214 Followers 1K Following Internal medicine PGY-1 at TRMC/RWJBH|#Aspiring Gastroenterologist | 🏊,⚽,🧑🍳 | When there is no enemy within, the enemy outside can do you no harm.
cristian quincho @CQuincho
392 Followers 5K Following
Keira @keirasaid
1K Followers 2K Following Australia’s crappiest X-men. Here for ReactJS, Ruby and ReasonML (she/her) Also Mastodon - @[email protected]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-8rsrb-1… #SYNGAP1
#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
Rainy Schlosser is on a 7,500 mile #Driveathon to participate in 3 studies to help find a cure for #SYNGAP1! She talks about studies, Hope's medical journey, Curious George, and connections along the way! Syngap.Fund/Stories
IT'S ALMOST HERE!!! Create your team today! Make it as simple as you want. Host a picnic, share your fundraiser online, or grab some friends for a run around the neighborhood. Every💲counts and funds research! #SprintForSyngap! #SYNGAP1 #EveryStepCounts Syngap.Fund/Sprint24
Having Jaxon's #SYNGAP1 diagnosis "was a sense of relief, we were finally able to put our finger on it!" - Monica Harding, Jaxon's mom Trailer - youtu.be/jjiGzDAxUh0 Details - Syngap.Fund/Jaxon Donate - givebutter.com/TZjVIv #ConnectionIsEverything
#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
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
How many people have SYNGAP1? 1Q24 = 🌏1,400 Syngap.Fund/Census 🇺🇸401 🇬🇧125 🇩🇪114 🇨🇳99 🇫🇷95 🇳🇱50 🇮🇹48 🇪🇸47 🇨🇦40 🇦🇺38 🇵🇱35 🇷🇺30 🇧🇷28 🇰🇷21 🇦🇷🇨🇭14 🇳🇴🇸🇪13 🇩🇰12 🇧🇪11 🇨🇴10 🇵🇹🇯🇵9 🇮🇪🇨🇱🇮🇱8 🇹🇷🇸🇮7 🇫🇮6 🇲🇽🇷🇸5 🇪🇪🇧🇾🇦🇹🇮🇳🇪🇬🇺🇦🇨🇿4 🇩🇴🇭🇺🇬🇷🇦🇪🇷🇴3 🇭🇰🇸🇷🇲🇦🇲🇾🇧🇦🇸🇰🇸🇬2 🇹🇹🇩🇿🇻🇪🇭🇷🇽🇰🇸🇦🇲🇨🇶🇦🇳🇿🇦🇲🇮🇷🇵🇪🇮🇸1
#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
"...many SYNGAP1 families have to work and can’t get to the studies. I could make the trip, so why not?" Roadtrip to be in 3 studies & raise💲to help find a cure for #SYNGAP1! Please support SRF - Syngap.Fund/Hope4theCure Follow their drive on IG & YT @Hope4theCure #Hope4theCure
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
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!
#WarriorWednesday #SYNGAP1 Jack (4 years old) from Sandpoint, Idaho “Loves being outside and jumping on the trampoline, swinging on swings and even riding his sister’s horse with her” Read his story & see more photos @ curesyngap1.org/syngap-warrior… #SRFWW no.199 #SYNGAP #CareAboutRare
We wish we could deliver everyone's coffee in a matching zebra truck, but allow this to suffice for now....
I'm absolutely blown away by the support everyone's shown to @RareBrewCoffee today for #RareDiseaseDay! Not only did we sell out of every bit of coffee we pre-ordered (more on the way soon), but we were able to make a $1,000 donation! to @cureSYNGAP1 on our first day! Thank you!
We are grateful for all our #RareDisease partnerships! @curechd2 @KdVSFoundation @cureSYNGAP1 @curedravet @LGS_Foundation @SCN8AAlliance @FamilieSCN2A and more. 🧬 💜🧬💙 🧬
Great article. ““It puts the nail in the coffin of treating RAS abnormalities in SYNGAP disorder,” Rumbaugh says. Instead, boosting levels of SYNGAP protein is likely a better goal.”
Thanks Angie and The Transmitter, for a nice piece on our recent paper. thetransmitter.org/synaptic-plast…
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
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