CJD Foundation @CJDFoundation
Our mission is to support families and loved ones touched by CJD. cjdfoundation.org Joined February 2014-
Tweets1K
-
Followers1K
-
Following2K
-
Likes238
Kicking off day 2 of the family conference with the Keynote Address in Honor of Dr. Pierluigi Gambetti by Glenn Telling, PhD, Director, Prion Research Center @ColoradoStateU #CJDFoundation
Join us today, Monday, June 9 at 7PM Eastern for an important meeting about the Fiscal Year 2026 budget and the new proposal to eliminate funding for the National Prion Disease Pathology Surveillance Center. To register email [email protected] or call (800) 659-1991.
Join us tomorrow, Monday, June 9 at 7PM Eastern for an important meeting about the Fiscal Year 2026 budget and the new proposal to eliminate funding for the National Prion Disease Pathology Surveillance Center. To register email [email protected] or call (800) 659-1991.
Join us Monday, June 9 at 7PM Eastern for an important meeting about the Fiscal Year 2026 budget and the new proposal to eliminate funding for the National Prion Disease Pathology Surveillance Center. To register email [email protected] or call (800) 659-1991.
If you would like to learn more about #priondisease, please join a Q&A webinar led by Dr. Appleby, Medical Director, CJD Foundation, & Director, National Prion Disease Pathology Surveillance Center. To register, please call 800-659-1991 or email [email protected].
We've got an inspiring and educational weekend planned for this year's Family Conference. Register by this Friday, May 23 to lock in the early bird rate.
We are pleased to announce a Call for New Grant Applications for research projects relating to human prion diseases. The deadline for receipt of Letters of Intent is July 17, 2025. Learn more at: cjdfoundation.org/researchers/ #cureCJD #priondisease #cjdresearch
Lock in the lowest registration price for the 2025 Family Conference by registering by Friday, May 23. secure.qgiv.com/event/2025conf…
This month's Genetic Prion Disease Virtual Support Group will be on the topic of Complicated Grief with special guest speaker, Kirsten McGinnis. Register for the session on April 29 by contacting our Helpline at 800-659-1991 or emailing [email protected].
Lock in the lowest registration price for the 2025 Family Conference by registering by Friday, May 23. We're bringing the Conference to Chicago this year and hope you can join the CJD community for a weekend of learning, healing and connection. secure.qgiv.com/event/2025conf…
Registration for #Strides4CJD is now open! Join us to pay tribute to your loved one & contribute to a cause that matters. We’re paving the way for progress. Making every stride count. We're not just walking; we're making history! secure.qgiv.com/event/stridesf…
All US families affected by prion disease, past or present, are welcome to attend the Western Region virtual support group. We will meet virtually on Tuesday, April 22 at 6PM Pacific. To register, email [email protected].
If you are currently caring for a loved one with CJD/Prion Disease, please join us for a Virtual Caregiver Support Group on April 15 at 7PM Eastern. To register, please contact our Helpline at 800-659-1991.
We are pleased to announce that, with your help, the CJD Foundation has awarded over $800,000 in new #researchgrants and #fellowships to Prion Disease research! cjdfoundation.org/research-grant… #cureCJD
Don't miss these April Virtual Support Groups! To register, call 800-659-1991 or email [email protected] with your name, your loved one’s name, and the teleconference you are registering for.
The Seattle Area Family Workshop is next week on March 27. Attending this event will provide a network of support from other families, education from the NPDPSC & CJD Foundation, and the opportunity for open dialogue. To register please email [email protected].
If you are a family affected by Genetic Prion Disease, please join us for a Peer-Led Virtual Support Group on March 19. This group is designed to provide support & the opportunity for open dialogue. To register, please call 800-659-1991 or email [email protected].
All US families affected by prion disease, past or present, are welcome to attend this virtual support group on March 18 at 6 pm Pacific. To register, email [email protected].
Join the Current Caregiver Virtual Support Group on March 11 at 7PM Eastern, led by several family members who have cared for a loved one in the past. Participants can share their questions and concerns. To register, please contact our Helpline at 800-659-1991.
The CJD community gathered in Washington, DC this week to meet with legislators and raise awareness of CJD. Thanks to all who were able to attend! #cureCJD #CJDAdvocacyDay

Simon Mead @smead2
3K Followers 2K Following Prions dementia climbing running dog walking Dad & husband. National Prion Clinic UCLH. Deputy Director @MRC_Prion @UCL NIHR Senior Investigator
Adriano Aguzzi @AdrianoAguzzi
25K Followers 1K Following Physician, Prof of Neuropathology, mountain biker, prion researcher, sepsis survivor. Posts orthogonal to my employer's.
MRC Prion Unit at UCL... @MRC_Prion
779 Followers 347 Following Our aim is to combine multidisciplinary and clinical research to understand prion diseases and address areas of public health concern.
Eric Vallabh Minikel @cureffi
5K Followers 850 Following My mission in life is to prevent prion disease.
CJD Support Network U... @supportcjd
442 Followers 474 Following UK Charity providing emotional and practical support for Creutzfeldt-Jakob Disease (CJD) https://t.co/jdR5nWNnH2 Charity No. 1097173 #CJD #Prion
Sabine Gilch @GilchLab
252 Followers 186 Following
prionalliance @prionalliance
2K Followers 162 Following Non-profit organization devoted to funding scientific research towards a treatment or cure for human prion diseases.
ShorterLab @ShorterLab
12K Followers 7K Following Countering deleterious phase transitions in ALS/FTD, PD, AD, and related disorders @Penn @PennMedicine @bb_upenn @BMBGGUPENN @PGGUPenn @PennNGG @CAMBUpenn
Bartz_Lab @LabBartz
200 Followers 161 Following Prion strain biology, prion pathogenesis and the environmental fate of prions
Ghazaleh Eskandari-Se... @GhazalehEsk
267 Followers 313 Following Postdoctoral fellow @BlurtonJoneslab @ucimind 🇺🇸 l LLHF and @Brightfocus Fellow I @UAlberta alumni 🇨🇦 #microglia enthusiast, #protein_misfolding 🧠🔬🧫
Ted Allison @Ted_Allison
800 Followers 1K Following Professor at U_Alberta, Edmonton. Mostly Neuroscience: Evolution of retina, visual system development and Alzheimer/Prion/TBI via zebrafish.
Dr Emmanuelle Vire @EmmanuelleVire
422 Followers 588 Following Epigenetics in human diseases. Empowering others and enabling cool science. @UCL @ULBruxelles @GurdonInstitute @Cambridge_uni @eLife
Michel Goedert @MichelGoed
2K Followers 306 Following Neuroscientist @MRC_LMB in Cambridge, UK. Studies Tauopathies and Synucleinopathies. From Luxembourg. All opinions are my own.
Fahri Küçükali @maegsul
948 Followers 4K Following Postdoc at @SleegersLab @CMN_VIB working on complex genetics of Alzheimer's. | GWAS, molQTLs, TWAS, splicing, long reads, rare variants. https://t.co/pO7ClZPMdI🦋
Melissa Rayner @melissa_rayner
259 Followers 564 Following Lecturer in Pharmacology @UCL, Community Pharmacist at @BootsUK
Abigail Diack @abigail_diack
409 Followers 464 Following Likes to hang upside down, get muddy, find bones, be outside. Owned by a cat. Scientist turned administrator. Views my own.
Claudia C @Claudsym
193 Followers 666 Following All views & opinions are my own. #🇬🇧& #🇻🇪hybrid, living & working in #🇧🇭 👩🏻❤️👨🏻&mother of👩🏼🤝👩🏻& 🐶
Kenneth Rosenbaum @KennethRos10039
86 Followers 4K Following
Beacon for Rare Disea... @RareBeacon
12K Followers 10K 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.
Nash @45XtNYoBT0DBd8B
12 Followers 171 Following
Sielor @Sielor7158979
66 Followers 2K Following
Theresa R.M. @TheresaRingMatt
4 Followers 34 Following My mission is to share the truth of my father’s CJD journey
屌你老母 @cxxssd3388494
3 Followers 1K Following
Vanessa P @VanessaPnyc
0 Followers 48 Following
큰형의 비계 @kroozzon579
122 Followers 334 Following 좀 더 잡다하고 사소하고 덜 부드러운 트윗을 올리는 비계. 본계보다 자극적이고 민감할수도 있는 내용이 올라오니 오시기 전 꼭 참고 부탁드립니다! 스핀: https://t.co/rmYCzoWkVW
큰형2 Big Brother�... @kroozzon580
54 Followers 100 Following 잡덕,개신교인✝️, 헤테로 회색무성애자. 잘 부탁드립니다. multifandom, Christian, She/her, Heteromantic Graysexual. Hope you have a nice day.
Daphne Snow @GaryLopez790058
11 Followers 104 Following laidback & loving it 😎✌️The luxury lifestyle without the luxury cost.https://t.co/qw4HCbthzb
Diane Chenard @diane_chenard
59 Followers 900 Following
Diana HofsteengeJans @DianaDiana0123
240 Followers 479 Following Regiomanager Regionaal Serviceteam Jeugd, regio IJsselland
Sir Future @Sirfuture01
202 Followers 293 Following
Didi @CoxyDidi
1 Followers 1K Following
RitaMatters @RitasLegacy
0 Followers 32 Following In honor of our mom, Rita Gamache. Finding answers, raising awareness, and building a legacy that will help those who come after us. #RitaMatters #RitasLegacy
mkurniady @mkurniady
390 Followers 814 Following
Victor Segura @vtsegura77
0 Followers 53 Following
Cenen @CanadaCofounder
56 Followers 399 Following
Dr. Samantha Soma @sisoma
3K Followers 3K Following Insatiably curious, holistically engaged, determined to be pleased. Leadership Coach, Design Facilitator, Team Builder. Ph.D. ICF PCC /@GEdesign @GE_Digital
David Sobek @dsobek
11K Followers 800 Following I am a biotech writer (among other jobs), who currently contributes to Chimera Research Group.
Darlene Park @DeeDee41524
6 Followers 75 Following
Hannah Williams @HannahWill9487
2 Followers 58 Following
Sarah-Jane Bungay @SJB_100
3K Followers 4K Following Frome bred, Bristol journo. Mum to Stanley. Need a Celebrant? Get in touch. Loves nature, holidays, red wine & telling stories. Loathes littering.
Julia @julia_valdemoro
6 Followers 70 Following
Dr. Pradip Singh @pradipbu92
270 Followers 3K Following PhD, Earth Historian @ipicytciencia @unicampoficial @Bundelkhandj @this_is_amu @bhu Philanthropist, Aparigrahi 🇮🇳🇧🇷🇲🇽🇺🇸🇧🇪🇦🇪🇨🇳🇵🇦
Frank @frankrmz14
0 Followers 15 Following
Istaq Ahmad @istaqahmad
291 Followers 5K Following Research Coordinator Department of Neurology, AIIMS New Delhi India
cjeep5 @cjeep599573
4 Followers 161 Following
Prabhleen kaur @KaurPrabh130
621 Followers 6K Following CSIR-SRF PhD Scholar at IGIB A Science enthusiast aspiring to explore and expand my knowledge in the field of biology.
Christina @chrissy_cupstid
15 Followers 37 Following Veterans Crisis Line: 988, press 1 https://t.co/A2Qfveyfiz #PTSDawareness #CureCJD
Steve @sranders17
64 Followers 1K Following
Bonnie @bonniewagner89
1K Followers 3K Following
Sezgi Canaslan @sezgicanaslan
259 Followers 383 Following Prionforschung, Graduated from @UniBogazici @unigoettingen
Nicholas Yijun Pan @YijunPan3
195 Followers 463 Following NHMRC Emerging Leadership Fellow; Alzheimer’s Association (USA) Fellow
Bartlomiej Okwiet @BartekOkwiet83
0 Followers 54 Following Medicine, University of Jan Dlugosz, Poland
TurtleLad @turtlelad99
117 Followers 6K Following
Simon Mead @smead2
3K Followers 2K Following Prions dementia climbing running dog walking Dad & husband. National Prion Clinic UCLH. Deputy Director @MRC_Prion @UCL NIHR Senior Investigator
Adriano Aguzzi @AdrianoAguzzi
25K Followers 1K Following Physician, Prof of Neuropathology, mountain biker, prion researcher, sepsis survivor. Posts orthogonal to my employer's.
MRC Prion Unit at UCL... @MRC_Prion
779 Followers 347 Following Our aim is to combine multidisciplinary and clinical research to understand prion diseases and address areas of public health concern.
Eric Vallabh Minikel @cureffi
5K Followers 850 Following My mission in life is to prevent prion disease.
CJD Support Network U... @supportcjd
442 Followers 474 Following UK Charity providing emotional and practical support for Creutzfeldt-Jakob Disease (CJD) https://t.co/jdR5nWNnH2 Charity No. 1097173 #CJD #Prion
prionalliance @prionalliance
2K Followers 162 Following Non-profit organization devoted to funding scientific research towards a treatment or cure for human prion diseases.
ShorterLab @ShorterLab
12K Followers 7K Following Countering deleterious phase transitions in ALS/FTD, PD, AD, and related disorders @Penn @PennMedicine @bb_upenn @BMBGGUPENN @PGGUPenn @PennNGG @CAMBUpenn
Bartz_Lab @LabBartz
200 Followers 161 Following Prion strain biology, prion pathogenesis and the environmental fate of prions
Mathias Jucker @MathiasJucker
987 Followers 62 Following Biomedical Researcher Professor @Uni_Tue and @DZNE_en
Alzheimer's Research ... @AlzResearchUK
89K Followers 1K Following We are the UK's leading dementia research charity and we won’t stop until everyone is free from the heartbreak of dementia. We stand #ForACure. 🟧
Ted Allison @Ted_Allison
800 Followers 1K Following Professor at U_Alberta, Edmonton. Mostly Neuroscience: Evolution of retina, visual system development and Alzheimer/Prion/TBI via zebrafish.
Rare Disease Day @rarediseaseday
42K 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
Michel Goedert @MichelGoed
2K Followers 306 Following Neuroscientist @MRC_LMB in Cambridge, UK. Studies Tauopathies and Synucleinopathies. From Luxembourg. All opinions are my own.
Abigail Diack @abigail_diack
409 Followers 464 Following Likes to hang upside down, get muddy, find bones, be outside. Owned by a cat. Scientist turned administrator. Views my own.
National Alzheimer's ... @NACCData
3K Followers 3K Following NACC collects, harmonizes, and shares Alzheimer's disease research data from 37 NIA funded Alzheimer's Disease Research Centers across the US.
Dr. Nina Silverberg @Nina_BSil
3K Followers 3K Following Director, National Institute on Aging Alzheimer’s Disease Research Centers Program. Opinions are my own & do not rep NIA/NIH/HHS
Daniel Ojeda Juarez, ... @DanOjedaJuarez
132 Followers 360 Following UC President’s Postdoctoral Fellow at UCSD Neurodegeneration, prion disease, neuroinflammation, and NeuroAIDS
BU Medical @BUmedical
548 Followers 812 Following Boston University Medical Campus (BUMC), located in the historic South End. Boston Medical Center is the primary teaching affiliate of the School of Medicine.
Christina Sigurdson @SigurdsonLab
37 Followers 56 Following #UCSD Pathologist studying neurodegenerative disease, focused on prion disorders.
Broad Institute @broadinstitute
99K Followers 4K Following A multidisciplinary community of researchers on a mission to improve human health.
UCL @ucl
140K Followers 898 Following Sharing highlights of life at UCL (University College London), London’s leading multidisciplinary university. Follow @uclnews and @uclevents.
The University of Edi... @EdinburghUni
157K Followers 403 Following The University is no longer posting or monitoring DMs on X. For news & updates, find us at LinkedIn: https://t.co/WTaqCgPylY
CJD SUPPORT GROUP NET... @CjdSupportgroup
7 Followers 12 Following We offer support, info and assistance to loved ones of patients suffering with suspected CJD and other prion disease & those at increased risk of developing CJD
CSU Microbiology, Imm... @CSU_MIP
774 Followers 130 Following Pursues innovative excellence in biomedical education, research, diagnostic service, and outreach to improve animal and human health.
Department of Laborat... @UofT_LMP
1K Followers 371 Following We're part of @uoftmedicine #UofT. We are no longer active on this account. Please follow us on LinkedIn, Instagram, YouTube and through our website. ⬇️
McGovern Med School @McGovernMed
11K Followers 290 Following The John P. and Kathrine G. McGovern Medical School's mission is to provide the highest quality of education/training of future physicians for Texas.
UC San Diego Systems ... @ucsd_sbrg
3K Followers 164 Following The Systems Biology Research Group at the University of California, San Diego, led by Dr. Bernhard Palsson
UC Davis @ucdavis
66K Followers 1K Following Official account of the University of California, Davis | California's College Town | Top tier public university | #GoAgs
Rocky Mountain Labs @RockyMountain_
14 Followers 1 Following Rocky Mountain Labs is a Medical Lab in Englewood, CO. We offer Hormone Testing, Blood Test, Allergy Testing and more.
Case Western Reserve @cwru
22K Followers 1K Following At Case Western Reserve University, we innovate, inspire and lead. Follow along to see how we think beyond the possible—in 280 characters or less. #CWRU
Minnesota Center for ... @UMN_MNPRO
233 Followers 117 Following MNPRO - A multidisciplinary think-tank atmosphere building and supporting strategic partnerships in neurodegenerative disease study - CWD, CJD, AD, PD, ALS
Surabhi Mehra @SurabhiMehra5
346 Followers 1K Following Postdoc @tanzuoft @UofT I @CJDFoundation fellow I PhD @IITBombay I Amyloid biology I Neurodegeneration I Synucleinopathies I Prion disorders🧠 (she/her)👩
Gregory Day @GDay_Neuro
1K Followers 454 Following Neurologist, Dementia Specialist and Clinical Researcher @ Mayo Clinic; views are my own.
Gabor G. Kovacs MD Ph... @GGKovacsBrain
814 Followers 204 Following Professor/University of Toronto & Consultant/University Health Network; Focus: Neuropathology/Neurology/Neurodegeneration Keywords: Nature/Compassion/Grit
Tom Trainer @TomTrainerSci
336 Followers 2K Following @LabManka PhD researcher, Structural Neurobiology of Prions at @ImperialInfect
Allison Kraus @AllisonKraus127
47 Followers 15 Following Assistant Prof CWRU School of Medicine. I study the protein seeds of neurodegenerative diseases, from structure to spread. Biochemistry, RT-QuIC, cryo-EM
Mitchell Center for A... @Proteopathy_Lab
216 Followers 1K Following A translational&interdisciplinary research center at @McGovernMed developing novel diagnostic tools & therapeutics for protein-misfolding-diseases
University College Du... @ucddublin
66K Followers 2K Following Official source of news from University College Dublin (UCD) - Ireland's Global University. Est. 1854. One of Europe's leading research-intensive universities
IU School of Medicine @IUMedSchool
16K Followers 2K Following @IndianaUniv School of Medicine is the US's largest, with expertise in Alzheimer’s disease, precision health, musculoskeletal health, global health and more.
Szymon W. Manka @LabManka
147 Followers 353 Following Structural biology of prions @ImperialInfect views my own
Dr Grace Hallinan @GraceHallinan
2K Followers 1K Following Neuroscience postdoc from Ireland ☘️ Currently @IUMedSchool researching tau, Alzheimer’s, and prion diseases. @UCDdublin and @unisouthampton alumna 🔬🧠 she/sí
The Nobel Prize @NobelPrize
1.2M Followers 497 Following The official feed of the Nobel Prize @NobelPrize #NobelPrize
Joel Watts @JoelWattsLab
343 Followers 175 Following Associate Professor at the Tanz Centre for Research in Neurodegenerative Diseases/Department of Biochemistry, University of Toronto
Elizabeth (Lizzie) Hi... @lizziehill35
229 Followers 480 Following Postdoc at the Center for Alzheimer’s and Neurodegenerative Diseases at UTSW.
Universität Tübinge... @uni_tue
22K Followers 364 Following Offizieller Account der Universität Tübingen. Mastodon: https://t.co/Fthzu3dyAD Bluesky: https://t.co/5OWUtWqM8k
CreightonSOM @CreightonSOM
2K Followers 975 Following United by our Jesuit identity, we transform learners into exceptional health care professionals who are leaders in advancing medicine, health & well-being.
Akin Gump Strauss Hau... @akin_gump
12K Followers 212 Following Akin is a leading global law firm providing innovative legal services and business solutions to individuals and institutions.
Sen. Elissa Slotkin @SenatorSlotkin
133K Followers 738 Following Senator from the great state of Michigan. Working to boost the middle class, protect our country, our kids and our democracy. Former national security official.
Rep. Jim Costa @RepJimCosta
30K Followers 1K Following Representing California's 21st Congressional District Fresno Native | Farmer | @HouseAgDems | @HouseForeign
Dave Joyce @RepDaveJoyce
29K Followers 3K Following Father, husband, and former prosecutor proudly representing #OH14
Rep. Shontel Brown @RepShontelBrown
42K Followers 497 Following Proudly Serving the People of Ohio's Eleventh Congressional District.
Rep. David Valadao @RepDavidValadao
25K Followers 517 Following Proudly Representing California's 22nd Congressional District. Serving the Valley on @HouseAppropsGOP
Marilyn Deutsch KPTV @marilyndeutsch
3K Followers 2K Following I am a former TV news reporter. I’m no longer Tweeting here, but find me at @marilyndeutsch2.
Ances BioImaging Labo... @AncesLaboratory
449 Followers 81 Following The Ances Lab is a neuroscience research lab at WUSTL School of Medicine, focused on neurodegeneration (including Alzheimer Disease, Down Syndrome, HIV and CJD)
Charity Navigator @CharityNav
70K Followers 5K Following Making Impactful Philanthropy Easier For All