Calan
Proud of the human I have become, proud Mum, Proud Wife, Proud Social Worker and Proud Patient Advocate and charity chair - CDKL5 UK BSc in Social Work and MSc in Global Health Policy
@pikehouse.bsky.social
Pikehouse Originals specializes in fabric creations for babies and special needs. Bibs, burp cloths, waterproof bed and chair mats, sensory quilts, ribbon quilts, slippers, g-tube pads and many other items. A portion of the proceeds supports CDKL5 DD.
@ruthyphro.bsky.social
Quaker Socialist, Proud Unpaid Carer-Activist; CDKL5 UK Trustee 💚🧬; #ZanesLaw UK Landfills Campaigner; London Green Party Disability Rep; Arts Consultant & Reviewer in #Havering; Writer; Speaker; Music 🦇; Philosophy; Furnisher of Fairy Lights
@jngai58.bsky.social
Neuroscientist, BRAIN enthusiast, photographer, husband, dad. All views are my own.
@audreyvernick.bsky.social
Epilepsy surgery mom, patient & family advocate, dog person. Former teacher and journalist. I support access to healthcare, equal rights, and a safe, clean environment. I love my family most of all. 🐶🏂🚴♂️🎭 (posts are my opinion only)
@thaddeusmurdoch.bsky.social
Bermudian marine scientist, artist, father of 3 great kids including one with CDKL5 deficiency disorder.
@cecilienome.bsky.social
PhD student exploring astrocytes GliaLab, University of Oslo | Neurology resident Sykehuset Østfold | Treasurer YES ILAE. Fascinated by all things epilepsy, stroke, sleep, and glial cells.
@tylerborchers.com
Operations Director. Previously TIME, VICE News and the Village Voice. Posting about media, technology and the future of work. Learn more: https://tylerborchers.com
@carlocolantuoni.bsky.social
Developing methods & assembling data to explore multi-omic dynamics across cell contexts, in stem cell models & neocortical development, neurodegeneration and neuroinflammation in particular: http://carlocolantuoni.org
@milofasken.bsky.social
Senior Scientist, Department of Biology, Emory University, Atlanta, GA. Molecular Biologist. RNA Scientist. Yeast Geneticist 🧬. British🇬🇧. Runner 🏃🏻…. Opinions are my own. Interests: RNA Decay, RNA Processing, RNA & Disease.
@alekerickson.bsky.social
Developmental/stem cell biologist at Karolinska, soon-to-be group leader at Stockholm University. I study embryonic tissue patterning and shaping. Also, music and abstract strategy games!
@edithalmanzafuerte.bsky.social
Lab Manager for the Mefford Lab | St Jude Research Hospital | 🇲🇽 | 🐻 |
@hc327.bsky.social
#iPSC scientist & #organoids engineer for #RareDisease working on disease modeling & precision medicine. @StJudeResearch, @ubc alumnus🇨🇦
@jdbux.bsky.social
Director, Seaver Autism Center for Research and Treatment, Icahn School of Medicine at Mount Sinai. Shakuhachi student.
@theplaguesrus.bsky.social
Covering all news on wars, politics, climate change, science, travelling, photography and more. 🌌 🌋 🌊 🦠 📚 🔫📸🧳
@micheledcollins.bsky.social
Founder of Hope for ULD, wife, mom, grandmother, teacher, animal lover, follower of Jesus, finding great value in truth, integrity and compassion, fighting #RareEpilepsy
@caraearth.bsky.social
Interessiert an Natur,Art,Sience und Politik.Lügner,Korruption und Kriminelle sind mir zuwider. Fan vom lebenslangen Lernen,Frieden und Mutter Erde. share≠like Ein freier Geist ist eine alte Seele, es gibt nichts mehr zu beweisen.
@rebekkadahl.bsky.social
PhD student & Bioinformatician @The Danish Epilepsy Centre/University of Southern Denmark🇩🇰 Computational Biology 👩💻 Clinical Genetics 🧬 Rare Diseases🦓
@patelsam.bsky.social
Cell Biologist | Orphan/Rare Diseases | Regenerative & Precision Medicine | Birdie Daddy | 🇨🇦 in 🇺🇸
@thevgccc.bsky.social
Raising awareness & promoting collaboration across the #calcium #channelopathies. Composed of caregivers & individuals impacted by the channelopathies, alongside researchers and clinicians focused on the 10 calcium genes. https://www.thevgccc.org
@cacna1c.bsky.social
Improving diagnosis, treatment and care of those living with #CACNA1C related disorders including #TimothySyndrome and #LongQT8. Registered charity no: 1185523. NGO Source certified 501(c)(3) equivalency determination. https://linktr.ee/cacna1c
@livingwellwithepilepsy.com
Your place for all things #epilepsy. Built by and for people living with and affected by #epilepsy. Around since 2009. Founder & CEO - Jessica K. Smith
@jwbelmon.bsky.social
#MD, #PhD | #Pediatrics | #Medical #Genetics | #Human #Genetics | #Cardiovascular | #Congenital | #Genome #Sequencing | #HealthEcon | #Causal #Inference belmontgenetics.org
@braintherapies.bsky.social
Neonatologist and scientist using organoids to study neonatal brain development and injury. https://www.BrainTherapeuticsLab.org/
@avoidingpublic.bsky.social
Mom, wife, rare disease patient. Systemic Mastocytosis. Treading water till I find the right Dr.🦋🦓💙
@kieranholland.bsky.social
Learning health systems embrace warranted variation. HealthPathways Network - Clinical Director of Research. Integrated care pathways. Argentine tango addict. healthpathwayscommunity.org Canterbury, New Zealand Twitter: x.com/kieranholland
@cdkl5incolor.bsky.social
On the CDKL5 in Color podcast you'll hear co-hosts Marissa & Amanda share lessons learned along the way as parent caregivers to children living with #CDKL5 Deficiency Disorder, a rare developmental and epileptic encephalopathy. www.CDKL5inColor.com
@mirrortogether.bsky.social
Daily Mirror special projects by Ros Wynne-Jones, Claire Donnelly & Maryam Qaiser Projects- #Yr9No10 #PeopleMove #BritainTalks #Europetalks #WiganPier80 We write stories for Real Britain, The Mirror's campaigning column 📝 https://tinyurl.com/bdbk8y49
@hopeforuld.bsky.social
Hope for ULD is uniting patients, families, doctors, and researchers to fund research, treatment, and education for Unverricht-Lundborg Disease ( #ULD ), also known as #EPM1. Learn more here: https://www.hopeforuld.org/ #RareEpilepsy #genetherapy
@ljmarksnyc.bsky.social
Rare disease advocate; nonprofit leader; tuberous sclerosis complex mom; SYNGAP1 sister. Committed to advancing human rights, trans rights, social justice, equity/belonging. Views mine
@curechd2.bsky.social
Patient advocacy group serving those affected by CHD2, a rare developmental & epileptic encephalopathy (DEE) associated w/Jeavons/EEM, photosensitive seizures, autism + intellectual disability. Accelerating research & supporting community www.curechd2.org
@nicepilepsywarrior.bsky.social
#Epilepsy #Autistic Sadly retired from #NHS due to health, enjoy walking, gardening or just watching the wildlife **No DMs from new followers please**
@shaimaahaiba.bsky.social
PhD. student in Neuroscience , Hertie institute for clinical brain research. Neurodevelopmental disorders, epilepsy, patch clamp electrophysiology.
@fredschaper.bsky.social
Instructor in Neurology, MD PhD | Neuroscientist at @braincircuits.bsky.social at Brigham and Women’s Hospital of MGB, Harvard Medical School | I’m Interested in neuromodulation, brain networks, and epilepsy
@jillianmckee.bsky.social
child neurologist | epilepsy neurogenetics | digital health | machine learning/AI enthusiast | physician mom | @ChildrensPhila 🇨🇦🇺🇸
@chrislisgaras.bsky.social
Res. Assistant Professor at NYU Grossman School of Medicine, Department of Psychiatry. Epilepsy, Alzheimer’s disease and Oscillations #HFOnews #ADEEGnews #CA2news https://linktr.ee/clisgaras https://med.nyu.edu/faculty/christos-lisgaras
@kearneylab.bsky.social
Neuroscience | Genetics | Pharmacology | Epilepsy | Neurodevelopmental Disorders | Targeted therapeutics | Northwestern University, Chicago | Opinions are my own 🧪👩🔬🧠🧬💊
@biadepaula-silva.bsky.social
Mom, immigrant 🇧🇷 and scientist. Interested in neuroinflammation and neurovirology in epilepsy, and MS. Assistant Professor - Pharmacology & Toxicology - University of Utah Obsessed with macrophages!
@clirinx.bsky.social
Clinical Research IT for Epilepsy & Rare Diseases Natural Hx Studies, Patient Registries, Electronic Data Collection Creator of The CRID and The RDDR Web: https://clirinx.com
@torierobinson.bsky.social
@EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | PPI Lead | #Epilepsy & #MentalHealth Research fiend | All views my own
@juanbonifacino.bsky.social
Cell biologist at NIH researching mechanisms of protein and organelle transport, and related diseases. Special interest in neurons and neurodevelopmental disorders. Passionate about science, nature, travel, and music. Views are my own.
@adamfeuerstein.bsky.social
Reporter at STAT. The Harry Kane of biotech. Dog ❤️er. Polk Award winner. Said one analyst: The likes of Adam Feuerstein attack viciously.
@rarediseasemom.bsky.social
Lindsay. Democratic nominee for VA House of Delegates district 69 (I had to resign from running sadly due to unexpected health emergency) Super focused on my local community ( Hampton Roads ) and rare disease advocacy.
@rarediseasepatient.bsky.social
#RareDisease patient, missing life: Polymath, classical musician, linguist, UNI instructor, minister, metaphysicist, intuitive, naturalist, #vegan ARA
@jbmanent.bsky.social
Developmental neurobiologist studying cortical malformations (grey matter heterotopia) and #epilepsy at INMED, INSERM in Marseille, France https://orcid.org/0000-0002-2436-8593