Melissa Hioco @MHioco
Joined June 2014-
Tweets123
-
Followers17
-
Following54
-
Likes247
Kicking off our Research Roundtable at the #STXBP1 Summit 2024 today. We are so excited to welcome our research community to Pennsylvania! stxbp1disorders.org/2024-summit-re…
Summary of our July #STXBP1 Research Roundtable posted! So much research progress including in urgently needed therapies. And, we have so much still to do to #curestxbp1! #Innovation #Collaboration #raredisease stxbp1disorders.org/blog/impressio…
A portion of proceeds from today's 50/50 will benefit @AmericanCancer Detroit Men Wear Pink and the @curestxbp1 Foundation on behalf of Reese Olson and Shelby Miller's respective #PlayersWeekend causes!
Two $70K grants for #STXBP1 research through the @MDBRide4Rare from @ODC_UPenn. LOIs due 24 Sept! Thanks to our riders with #LulusCrew / Team STXBP1. orphandiseasecenter.squarespace.com/grants/event-f… #RareDisease @Prosser_Lab
STXBP1 is hiring an Executive Director! Help us expand and scale our work so we can achieve our mission to accelerate #STXBP1 research, and activate and support our community. stxbp1disorders.org/careers
Tremendous two days with our #STXBP1 researchers at our Research Roundtable. We are accelerating science progress! Let's #curestxbp1 #STXBP1Summit2024
Our paper "STXBP1: fast-forward to a brighter future – a patient organization perspective" is out - in special issue of "Therapeutic Advances in Rare Disease" Focus is on our research strategy including #STXBP1 Fast Forward strategic plan doi.org/10.1177/263300… @curestxbp1
Fantastic @people interview with @BridgetKFinn #STXBP1 champion and mom to STX'er Flo, on her family's journey and advocacy work. So thankful for all you've done (so far!) and our ongoing collaboration! Let's #curestxbp1! loom.ly/Bf9_ZgE
Happy Easter! Happy Census! #STXBP1 Q1 census: 1085 patients worldwide! +112 patients identified this quarter! stxbp1disorders.org/news/stxbp1-ce… #STXBP1globalconnect @stxbp1
My 'Dancing to a Different Tune' interview with @Ceridwen_Hughes for #RarityLife is now online! If you haven't seen this new magazine yet, they do a wonderful job uplifting rare and storytelling. @raritylifemag samebutdifferentcic.org.uk/raritylife Issue 9 @GlobalGenes @curestxbp1 #STXBP1
Landed in Philadelphia! Here for tomorrow's @UpliftingAth's Young Investigator Draft. Excited to congratulate our #STXBP1 grantee @ArksAndSciences from @WeillCornell @curestxbp1
Landed in Philadelphia! Here for tomorrow's @UpliftingAth's Young Investigator Draft. Excited to congratulate our #STXBP1 grantee @ArksAndSciences from @WeillCornell @curestxbp1
Important read. #Rarediseases are different than common diseases. We need different regulatory approaches, and to use #acceleratedapproval @MPSSocietyCSO salon.com/2024/01/17/the…
Congratulations @wu_xuebing and @wendygold11 on your grant awards for important #stxbp1 research. #AntisenseOligos #Omics Thanks @MDBRide4Rare #LulusCrew! Let's #curestxbp1!
Congratulations @wu_xuebing and @wendygold11 on your grant awards for important #stxbp1 research. #AntisenseOligos #Omics Thanks @MDBRide4Rare #LulusCrew! Let's #curestxbp1!
Excited to announce our collaboration with @UpliftingAth to award @ArksAndSciences a $20k grant to support characterizing a novel #STXBP1 missense mouse! Join us to celebrate Dr. Guiberson at the Young Investigator Draft on Feb 3! #YID24 bit.ly/47R9QLz let's @curestxbp1
Read our end-of-year foundation recap "Celebrating 2023 & Looking Forward". Let's #curestxbp1! stxbp1disorders.org/blog/annualupd…
Celebrating 2023 - Shining the spotlight on @JSKuerbitz, stellar physician-scientist & child neurologist in our Basic Neuroscience Pathway @BCMChildNeuro. Advancing #autism #ataxia #neurogenetics discoveries by bridging clinical & model organism research. #EBF3 #STXBP1
Dr. Hsiao Tuan Chao & team @TexasChildrens @bcmhouston participate in STARR, a multicenter study to evaluate readiness & find critical information for future STXBP1 disorders clinical trials. Learn More: bit.ly/3GSDzaL @HTChaoLab @MingshanXue
Grateful to work w/ families, @curestxbp1, leaders & colleagues @TexasChildrens @ChildrensPhila @ChildrensColo @WeillCornell to advance #STXBP1 readiness for future therapeutic interventions. If interested, please reach out to a STARR site! @bcmhouston @bcmgenetics @bcm_neurosci
Grateful to work w/ families, @curestxbp1, leaders & colleagues @TexasChildrens @ChildrensPhila @ChildrensColo @WeillCornell to advance #STXBP1 readiness for future therapeutic interventions. If interested, please reach out to a STARR site! @bcmhouston @bcmgenetics @bcm_neurosci
Celebrating 2023 - Shining the spotlight on Sydney Michener & Alvina Zia! Rising stars in #RareDisorders research #EBF3 (@HADDSFoundation), #STXBP1, #EIF2AK2, #EIF2AK1, #PPFIA3 & more. In 2023, launched the @curestxbp1 #STARR Study for Clinical Trial Readiness @TexasChildrens!
Perfect Friday afternoon! Met @goodfrognosis awesome researcher @UCSF to talk about #STXBP1 My son & I got to tour her lab including checking out the amazing frogs and talking about #cilia. I've been so focused on the #synapse. Cilia are pretty cool #science #raredisease
Nic Malorzo @NicMalorzo
2K Followers 8K Following Fod Falcons #16, SS, Pitcher, 5’7, 168lbs, Class of 2027 - RFA Baseball/Football [email protected]
Hsiao-Tuan Chao (赵�... @HTChaoLab
925 Followers 645 Following Neuroscientist+Child Neurologist. McNair Scholar #RareDisease, #neurogenetics, inhibition/circuits, #autism, #epilepsy, & brain disorders. RT≠endorse. Own views
Asc. Sindrome STXBP1 @stxbp1
459 Followers 199 Following Asociación Síndrome STXBP1. La mutación en este gen cursa con retraso cognitivo y motor, y suele presentar encefalopatía epiléptica. #ApoyoSintaxina
GRIN2Bsyndrome @GRIN2Bsyndrome
787 Followers 472 Following Funding research & providing support & education to individuals & families impacted by GRIN2B-Related Neurodevelopmental Disorder. #GRIN2B
Terry Jo Bichell @TJBichell
796 Followers 1K Following Politics and Science, in equal measure. Rare disease biomarkers and outcomes specialist. DCDP Exec Comm at large.
Mike Graglia 🌻 @JMGraglia
7K Followers 2K Following CEO @cureSYNGAP1 🧬 Pod https://t.co/9jkDkMg5R8 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
John Oldenhof, PhD @john_oldenhof
268 Followers 284 Following Neuroscientist, parent advocate for son with #STXBP1 related disorder @curestxbp1 and early phase drug developer.
Peter Halliburton @phalliburton
3K Followers 2K Following Raising $$ for #SYNGAP1 🧬 gene therapy // @cureSYNGAP1 501(c)(3) Board // Carter & Presley’s Dad // @cyberark Channel Sales // Building a compound in TX 🇨🇱
SponsorMotion @SponsorMotion
281 Followers 2K Following Search our directory of health and wellness events @ https://t.co/JzEltUetyQ
FamilieSCN2A @FamilieSCN2A
2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.
Mingshan Xue @MingshanXue
657 Followers 649 Following Neuroscientist studying cats/dog/social interaction at home and synapse/circuit/neurodevelopmental disorder at work. My views are my own.
Leah @LeahEDSCN2A
963 Followers 1K Following Founder, Executive Director and Former President of the FamilieSCN2A Foundation. Mom and rare disease advocate of epilepsy and autism, SCN2A-related disorders.
Wu (Charles) Chen @charles51423
133 Followers 378 Following
Simons Searchlight @s_searchlight
2K Followers 3K Following Accelerating research by collecting data/biosamples from ppl w/rare #genetic causes of #autism & other neurodev dis. Researchers can get data: https://t.co/kokQ7uLYWd
marielle vd hout @mariellevdhout
13 Followers 40 Following
Capsida Biotherapeuti... @CapsidaBio
429 Followers 83 Following Engineering novel AAVs and developing the next generation of gene therapies
Encoded Therapeutics @EncodedTx
298 Followers 466 Following Creating disease-modifying gene therapies for CNS disorders with our cell-selective targeting and regulation platform. Guidelines: https://t.co/Flbfrl3SAg
JoeyLynn Nolan @NolanJoeylynn
75 Followers 144 Following Tbc1d24 Foundation, Rare Epilepsy Advocate, Respiratory Therapist, Research Coordinator, Mama, Wife and Bereaved Mother to Joey 🦘💜
Hsiao-Tuan Chao (赵�... @HTChaoLab
925 Followers 645 Following Neuroscientist+Child Neurologist. McNair Scholar #RareDisease, #neurogenetics, inhibition/circuits, #autism, #epilepsy, & brain disorders. RT≠endorse. Own views
RARE-X @RARE_X_
1K Followers 203 Following PATIENTS' DATA POWERING PROGRESS - RARE-X is expected to become the largest data-sharing initiative focused on rare diseases. More to come.............
Shino @shinohakobita
41 Followers 129 Following (He/Him) lover of life, food and family with nearly 50 years of experience. Creating gaming content on Youtube. https://t.co/Q0cnmPgk5P
Julie Xian @JulieXXian
178 Followers 198 Following MD-PhD trainee, @HopkinsMDPhD | Computational researcher, former @IngoHelbig lab 🧠 @ChildrensPhila | @Penn ‘22 | https://t.co/aTqTXR4hnj
Faye McLeod @fayemcloud9
318 Followers 310 Following Epilepsy Research Institute UK fellow at Newcastle University investigating synaptic connectivity in health and disease.
Mike Graglia 🌻 @JMGraglia
7K Followers 2K Following CEO @cureSYNGAP1 🧬 Pod https://t.co/9jkDkMg5R8 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
Terry Jo Bichell @TJBichell
796 Followers 1K Following Politics and Science, in equal measure. Rare disease biomarkers and outcomes specialist. DCDP Exec Comm at large.
SLC6A1 Connect @SLC6A1_Connect
460 Followers 201 Following SLC6A1 Connect is a non-profit dedicated to curing the rare neurological disease SLC6A1.
Tracy Dixon-Salazar @TracyDixonSalaz
3K Followers 934 Following Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
Rare Epilepsy Network @RareEpilepsy
2K Followers 617 Following Rare Epilepsy Network (REN) is working with urgency to collaboratively improve outcomes of rare epilepsy patients & families via research and advocacy.
CDKL5 - IFCR @CDKL5_IFCR
1K Followers 612 Following 501(c)(3) dedicated to advocacy, research & cures for #CDKL5 Deficiency Disorder - a Developmental & Epileptic Encephalopathy (DEE). Formerly used @CDKL5_USA
DEE-P Connections @DEE_Pconnection
733 Followers 392 Following Connecting families with severe developmental & epileptic encephalopathies to information, resources and each other
Rikke S. Møller @FiladelfiaGene1
2K Followers 703 Following Professor of Epilepsy Genetics; Head of Department of Epilepsy Genetics and Personalized Medicine at @Filadelfia_dk & SDU. Tweets are my own.
SYNGAP1 Foundation @Syngap1Fnd
3K Followers 3K Following SYNGAP1 Foundation is a legacy page dedicated to preserving the work and mission of our 100% charitable nonprofit in the USA, focused on #SYNGAP1
KCNQ2 Cure Alliance @Kcnq2Cure
971 Followers 920 Following Our promise is to educate and to advance research leading to treatments or a cure for patients living with the genetic disorder KCNQ2
Ingo Helbig @IngoHelbig
3K Followers 377 Following Child Neurologist, epilepsy genetics researcher, blogger
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.
SETBP1 Society @setbp1
318 Followers 159 Following President of SETBP1 Society and Parent Advocate for SETBP1-HD
CACNA1A Foundation @cacna1a
2K Followers 2K Following Nonprofit dedicated to a brighter future for those with CACNA1A variants. On a mission to fund life changing research while supporting families along the way.
GRIN2Bsyndrome @GRIN2Bsyndrome
787 Followers 472 Following Funding research & providing support & education to individuals & families impacted by GRIN2B-Related Neurodevelopmental Disorder. #GRIN2B
John Oldenhof, PhD @john_oldenhof
268 Followers 284 Following Neuroscientist, parent advocate for son with #STXBP1 related disorder @curestxbp1 and early phase drug developer.
GETA @geneticepilepsy
1K Followers 1K Following GETA: GET A Team, GET A Target, GET A Cure for genetic epilepsy
Ana Mingorance @CNSdrughunter
3K Followers 1K Following 🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others. @cnsdrughunter.bsky.social
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.
Leah @LeahEDSCN2A
963 Followers 1K Following Founder, Executive Director and Former President of the FamilieSCN2A Foundation. Mom and rare disease advocate of epilepsy and autism, SCN2A-related disorders.
COMBINEDBrain @combined_brain
856 Followers 500 Following Consortium for Biomarkers and Outcome Measures for Neurodevelopmental Disorders https://t.co/4odslIFF84
melissa j hogan @melissajhogan
4K Followers 940 Following Attorney • Advocate • Author, “Afraid of the Doctor” • I write • I love • I’m mostly on Bluesky, Insta, Substack
Weill Cornell Medicin... @WeillCornell
40K Followers 1K Following Combining excellence & innovation in clinical care, research & education. #CareDiscoverTeach
Weill Cornell Medicin... @WCMPopHealthSci
3K Followers 1K Following Population Health Sciences at @WeillCornell: Advancing knowledge, practice, and policy approaches to improve the health of populations.
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 🎙
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.
FamilieSCN2A @FamilieSCN2A
2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.
Katie Helbig @katiehelbig
1K Followers 378 Following epilepsy, neurodevelopmental disorders, genetics 🧠 🧬 | #innovation for #RareDisease | champion of red wine and nacho connoisseur | opinions are mine
Simons Searchlight @s_searchlight
2K Followers 3K Following Accelerating research by collecting data/biosamples from ppl w/rare #genetic causes of #autism & other neurodev dis. Researchers can get data: https://t.co/kokQ7uLYWd
Rocklin Choir @rocklinchoir
77 Followers 11 Following Official Twitter for the Rocklin High School Choir Program
HALO @HALOdotscience
1K Followers 4K Following Move Science Forward - Join a community of scientists from academia, startups and industry working together to bring new innovations to the world
Ann Maxwell OBE @Anniimaxx
1K Followers 1K Following Retired charity fundraiser. Passionate about a cause. Mother of Muir who has a severe form of epilepsy called Dravet syndrome. Brain tumour survivor.
Epilepsy Positivity @epilepsyposi
15K Followers 13K Following Hopjng to support people living with and affected by epilepsy and educate the general public. Mental Health Project: @mindsofepilepsy
Roseville Police Depa... @RSVL_Police
16K Followers 293 Following Join our team: https://t.co/yPLBiZ2xzC. Not monitored off hours. Call 911/774-5000 x 1 if police response needed.
Dravet Syndrome Found... @curedravet
4K Followers 657 Following The mission of DSF is to raise funds for research into Dravet syndrome and related epilepsies, while offering support to patients and families.
Epilepsy Foundation o... @EpilepsyFdn
38K Followers 2K Following #EpilepsyAwareness & Education | FREE #SeizureFirstAid Certification | 24/7 Helpline (1-800-332-1000) | Unwavering ally for people w/ #epilepsy & #seizures.
UCSF Benioff SF @UCSFChildrens
29K Followers 3K Following UCSF Benioff Children's Hospital SF creates an environment where children and their families find compassionate care at the forefront of scientific discovery.
CURE Epilepsy @CureEpilepsy
19K Followers 1K Following CURE Epilepsy is the leading nongovernmental funder of epilepsy research, with over 300 grants funded in 18 countries to date.
American Epilepsy Soc... @AmEpilepsySoc
15K Followers 753 Following We support research and education for professionals working towards a world without epilepsy. RTs ≠ endorsements. Also @amepilepsysoc.bsky.social.
BarabanLab @BarabanLab
3K Followers 3K Following Translational epilepsy research in an academic setting | neuroscience, drug discovery, zebrafish, electrophysiology, cell therapy, precision medicine and moreTrends for United States
You might like
