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The Sumaira Foundation Profile
The Sumaira Foundation

@TheSumairaFDN

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Raising awareness of rare neuroimmune disorders, building community, supporting research and advocating on behalf of patients globally.

Boston, MA
Joined November 2014
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@TheSumairaFDN
The Sumaira Foundation
5 months
🗞️📰 We at TSF have some BIG news to share… .
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pcori.org
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@TheSumairaFDN
The Sumaira Foundation
7 hours
🇨🇴 Damos la bienvenida al Dr. Luis Zarco como nuevo Embajador Clínico de TSF en Colombia. Neurólogo especializado en EM y NMOSD, trabajará para aumentar la conciencia, educación y apoyo a pacientes y cuidadores en el país.
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@grok
Grok
6 days
Join millions who have switched to Grok.
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@TheSumairaFDN
The Sumaira Foundation
13 hours
RT @MayoNeuroFellow: Congratulations to Dr. Hooshmand (Movement Disorders Fellow, Mayo Clinic residency graduate) on her publication “Appli….
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@TheSumairaFDN
The Sumaira Foundation
1 day
⚽️ Great to meet Tristan Blackmon, Sebastian Berhalter and Max Arfsten from the 🇺🇸 US Soccer Men’s Soccer Team @USMNT today! Good luck in your upcoming match against South Korea 🇰🇷
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@TheSumairaFDN
The Sumaira Foundation
4 days
RT @MSJ_Research: The definition of acute disseminated encephalomyelitis #ADEM need to be updated to be applied to attacks at any time duri….
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@TheSumairaFDN
The Sumaira Foundation
4 days
Want to attend a TSF Patient Day? Save the date for 2025 events below:. 🇺🇸 Seattle, WA - October 18 (Registration is open: @ShuvroRoy . 🇨🇦 Toronto - November 8. 🇮🇹 Rome - November 22 @neurotutto . 🇫🇷 Lyon - November 29 @marignierro @JuliePique
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@TheSumairaFDN
The Sumaira Foundation
4 days
RT @JAMANeuro: Case report: a false-negative result of the aquaporin-4–immunoglobulin G (AQP4-IgG) test due to the prozone effect in a woma….
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@TheSumairaFDN
The Sumaira Foundation
4 days
RT @MSJ_Research: Misapplication of the 2015 criteria for neuromyelitis optica #NMOSD is common, and alternative explanations in seronegati….
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@TheSumairaFDN
The Sumaira Foundation
6 days
In 2021, following a long-term infection & COVID, Terry developed multiple health issues including pericarditis, Sjögren’s disease followed by an #NMOSD diagnosis after worsening symptoms. Read how Terry has gotten her groove back despite her challenges:
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@TheSumairaFDN
The Sumaira Foundation
7 days
#MOGAD in the media: "Dad Has Headache That 'Would Not Go Away'—Diagnosis Shocks Young Family". Thank you @Newsweek for covering this story and raising awareness of MOGAD.
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newsweek.com
Newsweek spoke to his doting wife Michelle, 33, about the rare autoimmune disease that has "has changed nearly every aspect" of their lives.
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@TheSumairaFDN
The Sumaira Foundation
7 days
RT @SumairaFlower: The 1-month countdown for @ECTRIMS Patient Community Day 2025 in Barcelona has begun! 🇪🇸. ECTRIMS Patient Community Day….
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@TheSumairaFDN
The Sumaira Foundation
7 days
We can't believe it's already been one month since TSF's Chicago Patient Day! 🩷🧡💛. Read the event summary, view the photo gallery and relive our great day here: #AE #MG #MOGAD #NMOSD #SPS
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@TheSumairaFDN
The Sumaira Foundation
7 days
💡🩷 A study in @SclerosisAnd revealed the impact of #NMOSD and #MOGAD on thinking abilities and emotional wellbeing. Read the plain-language summary here:
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@TheSumairaFDN
The Sumaira Foundation
8 days
🇨🇦 🇨🇦 The Sumaira Foundation is pleased to welcome Dr. Dalia Rotstein, neurologist specialized in #MS, #NMOSD, #MOGAD and other demyelinating diseases to join TSF’s Medical Advisory Board as the first representative from Canada. Learn about Dr. Rotstein:.
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@TheSumairaFDN
The Sumaira Foundation
8 days
RT @JAMANeuro: Meningitis may sometimes be an early sign of meningoencephalitis or parenchymal disease, with lesions not yet visible due to….
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@TheSumairaFDN
The Sumaira Foundation
11 days
We're coming to Seattle!. We're inviting patients & caregivers impacted by #AE, #CNSvasculitis, #MOGAD, #neurosarcoidosis, #NMOSD and #SPS to join us in Seattle on 10/18!. Join us for a day of education, community and fun . @ShuvroRoy
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@TheSumairaFDN
The Sumaira Foundation
11 days
RT @GreenJournal: This study investigated neurodegeneration in MOGAD, independent of relapses, by comparing clinical, cognitive, and advanc….
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@TheSumairaFDN
The Sumaira Foundation
12 days
🇨🇦 Excellent news from Canadians living with #NMOSD & #MG!. Alexion, AstraZeneca Rare Disease reaches an agreement with the pan-Canadian Pharmaceutical Alliance (pCPA) for Ultomiris for the treatment of adults with NMOSD and adults gMG.
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newswire.ca
/CNW/ - Alexion Pharma Canada Corp., AstraZeneca's Rare Disease group, has entered into a Letter of Intent (LOI) with the pan-Canadian Pharmaceutical Alliance...
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@TheSumairaFDN
The Sumaira Foundation
13 days
You're invited to TSF's Research Update & Award Ceremony on September 24th in Barcelona! 🇪🇸. Join us for research updates & celebrate the achievements of our 3rd Global Rare Trailblazer Award recipient. 100% of proceeds will be used to fund research. 🎟️
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