JOHNNY DEPP ⭐️says loving "get well soon" video message to little boy Jed Baker⭐️💛with #MoyaMoya brain disease in Queensland , Australia /*11th anniversary!*/ (19/1/15) - Video here > youtu.be/2qblyhEjXiE / #MoyaMoyaAustralia 💙🤍 #Pirates #JackSparrow #CaptainJackSparrow #POTC #JohnnyDeppCharity
JOHNNY DEPP sends “get well soon” message 💛 to boy with #MoyaMoya brain disease in Queensland Australia - Jed Baker.
- Unforgettably kind, genuine and very human ✨
👉 Australian TV report on this moment here > youtu.be/2qblyhEjXiE
(19/1/15) / *11th anniversary*
#JohnnyDepp #PiratesOfTheCaribbean
New #ESOBlog: Our new topic “Resilience in Research”
Read it here: 🔗https://ow.ly/tnxF50XTjuV
"Rejection is not the end—it is feedback". Prof. Bersano highlights the importance of flexibility and persistence in research innovation.
#Neurology #Moyamoya #Stroke #Resilience
🧠 Join our ESO–VASCERN webinar on practical tools and registries supporting care for CADASIL & Moyamoya Angiopathy with Dominique Hervé & Nicola Rifino
📅 11 Dec | 16:00 CET
🔗 Register: us02web.zoom.us/webinar/regi...
#Neurovascular #RareDisease #CADASIL #Moyamoya #MedEd
DMM TV to Exclusively Stream the 13th Season of 'Moya Moya Samazzu 2' from Hawaii Starting September 6 #Japan #Tokyo #Hawaii #DMM_TV #MoyaMoya
🎉 Today is double vote day. Your one free vote counts as 2! Let's make sure she moves to the round.
🥋 Vote and help Annabelle realize her dreams.
#moyamoya #karate #OGKK #AAU #karategirl #singlemom
Where people will vote:
athleteoftheyear.org/2025/annabelle-64d0
Last Friday, our Neurovascular Diseases WG met in Essen 🇩🇪 for a collaborative summer meeting!
Key moments:
✅ Moyamoya e-learning module validated 🎉
✅ Scientific session + hands-on workshop
✅ Case discussions
Thanks to our hosts & all attendees!
#RareDiseases #CADASIL #Moyamoya #CrossBorderCare
Up to 75% of people with Moyamoya angiopathy suffer from disabling headaches often without proper diagnosis or care.
Our recent webinar on #headache in Moyamoya shares crucial insights on diagnosis & treatment.
🎥Watch here: bit.ly/3S0tCOo
#Moyamoya #RareDiseases
Today, we honour the strength and resilience of this global patient community as they continue to work towards improving diagnostics and care.
#RareKidsCAN #PediatricRareDisease #PediatricStroke #Neurosurgery #Moyamoya
Moyamoya disease is characterized by the narrowing or blockage of brain arteries, resulting in delicate collateral vessels that resemble a "puff of smoke" on imaging.
5/6 is #Moyamoya Awareness Day. moyamoya-foundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
⏰ Our webinar on headache in #Moyamoya angiopathy is happening today!
Headache isn’t simple in Moyamoya. It could be an early warning sign or something we don't fully understand yet.
Join us live at 17:00 CEST to learn more. Bring your questions!
👉 bit.ly/43p4FTz
Why do headaches affect so many patients with #Moyamoya?
Meet our expert speakers for our April 28 webinar:
🔸 Prof. Aamodt – Stroke & headache expert from Oslo
🔸 Dr. Hervé – Neurovascular disease specialist, Paris
Register here: bit.ly/43p4FTz
#Neurology #RareDisease #Headache #migraine
Anecdotal but also one of the many, many reasons we need DEI
www.tiktok.com/t/ZP82RcY1k/
#dei #moyamoya
The @moyamoyafoundation.bsky.social is gathering input from #moyamoya patients on what they’d like to hear about at upcoming educational events. Please follow this link: docs.google.com/forms/d/1wxF....
Responses are de-identified and are not part of a research project.
Nice #grandrounds presentation today by Dr. Lucie Guo on subretinal hemorrhage in the setting of #moyamoya
#medsky #eyesky #stanfordretina
Children with #Moyamoya arteriopathy face higher risks of recurrent ischemic #stroke, but its impact on overall health, mental health, and quality of life is less understood.
Discover more about these patient-reported outcomes: https://buff.ly/3Wcv9Di
#NeuroSky #PediatricStroke #NeuroSkyence
“Moyamoya Research Opportunity” Image: Help move forAI powered moyamoya research (infographic with a brain held in a blue hand) Study: Understanding large language model (LLM) performance on questions about moyamoya Principal investigator: Dr. Alfred See, Boaton Children’s Hospital
Description: Little is known about LLM performance in scenarios resembling its anticipated everyday clinical usage. Our aim is to better understand the reliability and limitations of generative AI in guiding patients and patient families through neurological disorders. Your insights are vital to advancing how artificial intelligence plays a role in people’s understanding of moyamoya. Together, we can explore and refine the role of AI in providing accurate and safe data on neurosurgical conditions. Eligibility: Anyone who shows an interest in moyamoya or visits the Moyamoya Foundation website and elects to take the survey. Survey link: https://redcap.tch.harvard.edu/redcap_edc/surveys/?s=MPTE4AX39LJKFW8W
If you are interested in #moyamoya and #LargeLanguageModels, please consider completing this study survey from Boston Children’s Hospital. Eligible for patients, caregivers, advocates, clinicians, and researchers! #RareDisease #Neurosurgery #Neurology
Link: redcap.tch.harvard.edu/redcap_edc/s...
@moyamoyafoundation.bsky.social is now on Bluesky!! Follow for educational information and updates on foundation events and initiatives! #Moyamoya #RareDisease #Neurology #Neurosurgery
623 volgers , kunnen we er geen 623 RT van maken voor #meerbekendheid #zeldzameziekte #moyamoya http://cms.moyamoya.webnode.nl/ #dtv
