Zittend op de rand van het bed merkte ik op dat ik langzaam naar rechts bewoog, looptest hetzelfde. Dikke schrik, want dat betekent balansproblemen. Zo begon mijn diagnosetraject vorig jaar oktober. Spoedlijn MS gebeld, overleg met neuroloog, ik word teruggebeld.
I don’t like this game.
#NMOSD
I don’t like this game.
#NMOSD
September 11, 2025 at 8:11 AM
Zittend op de rand van het bed merkte ik op dat ik langzaam naar rechts bewoog, looptest hetzelfde. Dikke schrik, want dat betekent balansproblemen. Zo begon mijn diagnosetraject vorig jaar oktober. Spoedlijn MS gebeld, overleg met neuroloog, ik word teruggebeld.
I don’t like this game.
#NMOSD
I don’t like this game.
#NMOSD
Meet Alyssa, TSF Canada’s newest Ambassador! Alyssa was DXed with AQP4+ #NMOSD in 2018 after her 18th birthday.
Studying global politics, Alyssa hopes to bridge the gaps between how health, politics, and the global economy intersect and can promote #healthequity beyond the borders of countries.
Studying global politics, Alyssa hopes to bridge the gaps between how health, politics, and the global economy intersect and can promote #healthequity beyond the borders of countries.
January 8, 2025 at 2:24 PM
Meet Alyssa, TSF Canada’s newest Ambassador! Alyssa was DXed with AQP4+ #NMOSD in 2018 after her 18th birthday.
Studying global politics, Alyssa hopes to bridge the gaps between how health, politics, and the global economy intersect and can promote #healthequity beyond the borders of countries.
Studying global politics, Alyssa hopes to bridge the gaps between how health, politics, and the global economy intersect and can promote #healthequity beyond the borders of countries.
Does progression occur independent of relapses (#PIRA) in neuromyelitis optica (#NMOSD)? Our PhD student Pakeeran Siriratnam examined this in real-world data & by tracking data on each progression event. @masturamonif.bsky.social @vjokubaitis.bsky.social
www.neurology.org/doi/10.1212/...
www.neurology.org/doi/10.1212/...
Prevalence of Progression Independent of Relapse Activity and Relapse-Associated Worsening in Patients With AQP4-IgG–Positive NMOSD | Neurology
ObjectivesIn aquaporin-4 antibody–positive neuromyelitis optica spectrum disorder (AQP4-IgG
NMOSD), disability accrual is mostly attributed to relapses. This study aimed to assess
the prevalence of pr...
www.neurology.org
December 17, 2024 at 7:02 AM
Does progression occur independent of relapses (#PIRA) in neuromyelitis optica (#NMOSD)? Our PhD student Pakeeran Siriratnam examined this in real-world data & by tracking data on each progression event. @masturamonif.bsky.social @vjokubaitis.bsky.social
www.neurology.org/doi/10.1212/...
www.neurology.org/doi/10.1212/...
It's never too early to get excited for ECTRIMS Patient Community Day 2025!
Save the date for a day dedicated to #MOGAD, #MS and #NMOSD patients on September 26th in Barcelona 🇪🇸
Until then, watch replays from the 2024 🇩🇰 event in 6 languages here: www.youtube.com/watch?v=q8yJ...
Save the date for a day dedicated to #MOGAD, #MS and #NMOSD patients on September 26th in Barcelona 🇪🇸
Until then, watch replays from the 2024 🇩🇰 event in 6 languages here: www.youtube.com/watch?v=q8yJ...
ECTRIMS 2024 Patient Community Day - ENGLISH
YouTube video by ECTRIMS Congress
www.youtube.com
February 27, 2025 at 1:13 PM
It's never too early to get excited for ECTRIMS Patient Community Day 2025!
Save the date for a day dedicated to #MOGAD, #MS and #NMOSD patients on September 26th in Barcelona 🇪🇸
Until then, watch replays from the 2024 🇩🇰 event in 6 languages here: www.youtube.com/watch?v=q8yJ...
Save the date for a day dedicated to #MOGAD, #MS and #NMOSD patients on September 26th in Barcelona 🇪🇸
Until then, watch replays from the 2024 🇩🇰 event in 6 languages here: www.youtube.com/watch?v=q8yJ...
Can’t get enough of the TSF flower spinal cord? Same here! 🌺
😎 Stay cool this summer with TSF swag for NMOSD & MOGAD awareness! www.bonfire.com/groovy-tsf-s...
TSF merch is available in a variety of sizes and colors and ships worldwide 🌎 Tag us in your pics when rocking our swag!
😎 Stay cool this summer with TSF swag for NMOSD & MOGAD awareness! www.bonfire.com/groovy-tsf-s...
TSF merch is available in a variety of sizes and colors and ships worldwide 🌎 Tag us in your pics when rocking our swag!
July 7, 2025 at 3:02 PM
Can’t get enough of the TSF flower spinal cord? Same here! 🌺
😎 Stay cool this summer with TSF swag for NMOSD & MOGAD awareness! www.bonfire.com/groovy-tsf-s...
TSF merch is available in a variety of sizes and colors and ships worldwide 🌎 Tag us in your pics when rocking our swag!
😎 Stay cool this summer with TSF swag for NMOSD & MOGAD awareness! www.bonfire.com/groovy-tsf-s...
TSF merch is available in a variety of sizes and colors and ships worldwide 🌎 Tag us in your pics when rocking our swag!
AQP4 + NMOSD disease is in fact a disease not a syndrome and is now named as such.
-NMO spectrum is now only the people who are antibody negative incomplete syndromes should be named as they present (recurrent ON, recurrent TM etc)
-NMO spectrum is now only the people who are antibody negative incomplete syndromes should be named as they present (recurrent ON, recurrent TM etc)
September 24, 2025 at 1:27 PM
AQP4 + NMOSD disease is in fact a disease not a syndrome and is now named as such.
-NMO spectrum is now only the people who are antibody negative incomplete syndromes should be named as they present (recurrent ON, recurrent TM etc)
-NMO spectrum is now only the people who are antibody negative incomplete syndromes should be named as they present (recurrent ON, recurrent TM etc)
Animal/plant/fungal protein contaminated vaccines cause 100s of autoimmune diseases including autism, heart disease, atherosclerosis, type 1 diabetes, hypertension, myasthenia gravis, multiple sclerosis, SIDS, Hashimoto's, NMOSD, ADHD and of course GBS.
www.nature.com/articles/s41...
www.nature.com/articles/s41...
Global burden of vaccine-associated Guillain-Barré syndrome over 170 countries from 1967 to 2023 - Scientific Reports
Scientific Reports - Global burden of vaccine-associated Guillain-Barré syndrome over 170 countries from 1967 to 2023
www.nature.com
October 26, 2024 at 5:14 PM
Animal/plant/fungal protein contaminated vaccines cause 100s of autoimmune diseases including autism, heart disease, atherosclerosis, type 1 diabetes, hypertension, myasthenia gravis, multiple sclerosis, SIDS, Hashimoto's, NMOSD, ADHD and of course GBS.
www.nature.com/articles/s41...
www.nature.com/articles/s41...
Congrats Letitia who's been appointed as TSF's International Ambassador Liaison.
Letitia is an #NMOSD patient & #cancer survivor who joined TSF in 2020 as the 1st int'l Ambassador, representing South Africa 🇿🇦. She will be overseeing TSF's Ambassador Program in Europe, Africa, Asia and Australia.
Letitia is an #NMOSD patient & #cancer survivor who joined TSF in 2020 as the 1st int'l Ambassador, representing South Africa 🇿🇦. She will be overseeing TSF's Ambassador Program in Europe, Africa, Asia and Australia.
December 3, 2024 at 1:13 PM
Most people knew Ted Kotcheff from the films he directed (First Blood, Weekend At Bernie's) but we knew him as the guy who got involved w/our charity work w/social services, #NMOSD etc. which really revealed a level of class/compassion that went far beyond the movies he made. He will be missed. #RIP
April 15, 2025 at 1:34 AM
Most people knew Ted Kotcheff from the films he directed (First Blood, Weekend At Bernie's) but we knew him as the guy who got involved w/our charity work w/social services, #NMOSD etc. which really revealed a level of class/compassion that went far beyond the movies he made. He will be missed. #RIP
Animal/plant/fungal protein contaminated vaccines cause 100s of autoimmune diseases including autism, heart disease, atherosclerosis, type 1 diabetes, hypertension, myasthenia gravis, multiple sclerosis, SIDS, Hashimoto's, NMOSD, ADHD and of course GBS.
www.nature.com/articles/s41...
www.nature.com/articles/s41...
Global burden of vaccine-associated Guillain-Barré syndrome over 170 countries from 1967 to 2023 - Scientific Reports
Scientific Reports - Global burden of vaccine-associated Guillain-Barré syndrome over 170 countries from 1967 to 2023
www.nature.com
October 27, 2024 at 4:33 AM
Animal/plant/fungal protein contaminated vaccines cause 100s of autoimmune diseases including autism, heart disease, atherosclerosis, type 1 diabetes, hypertension, myasthenia gravis, multiple sclerosis, SIDS, Hashimoto's, NMOSD, ADHD and of course GBS.
www.nature.com/articles/s41...
www.nature.com/articles/s41...
Animal/plant/fungal protein contaminated vaccines cause 100s of autoimmune diseases including autism, heart disease, atherosclerosis, type 1 diabetes, hypertension, myasthenia gravis, multiple sclerosis, SIDS, Hashimoto's, NMOSD, ADHD and of course GBS.
www.nature.com/articles/s41...
www.nature.com/articles/s41...
Global burden of vaccine-associated Guillain-Barré syndrome over 170 countries from 1967 to 2023 - Scientific Reports
Scientific Reports - Global burden of vaccine-associated Guillain-Barré syndrome over 170 countries from 1967 to 2023
www.nature.com
October 26, 2024 at 7:35 AM
Animal/plant/fungal protein contaminated vaccines cause 100s of autoimmune diseases including autism, heart disease, atherosclerosis, type 1 diabetes, hypertension, myasthenia gravis, multiple sclerosis, SIDS, Hashimoto's, NMOSD, ADHD and of course GBS.
www.nature.com/articles/s41...
www.nature.com/articles/s41...
Animal/plant/fungal protein contaminated vaccines cause 100s of autoimmune diseases including autism, heart disease, atherosclerosis, type 1 diabetes, hypertension, myasthenia gravis, multiple sclerosis, SIDS, Hashimoto's, NMOSD, ADHD and of course GBS.
www.nature.com/articles/s41...
www.nature.com/articles/s41...
Global burden of vaccine-associated Guillain-Barré syndrome over 170 countries from 1967 to 2023 - Scientific Reports
Scientific Reports - Global burden of vaccine-associated Guillain-Barré syndrome over 170 countries from 1967 to 2023
www.nature.com
October 26, 2024 at 4:00 AM
Animal/plant/fungal protein contaminated vaccines cause 100s of autoimmune diseases including autism, heart disease, atherosclerosis, type 1 diabetes, hypertension, myasthenia gravis, multiple sclerosis, SIDS, Hashimoto's, NMOSD, ADHD and of course GBS.
www.nature.com/articles/s41...
www.nature.com/articles/s41...
🏃🏿♀️ This #Thanksgiving, we're spotlighting Marion, #NMOSD patient, TSF Ambassador of Illinois, marathoner & believer.
Read "One Diagnosis, Three Marathons, Infinite Strength" - Marion's testimonial about how she will NEVER let #NMO defeat her: sumairafoundation.org/one-diagnosi...
#NeuroSky
Read "One Diagnosis, Three Marathons, Infinite Strength" - Marion's testimonial about how she will NEVER let #NMO defeat her: sumairafoundation.org/one-diagnosi...
#NeuroSky
November 28, 2024 at 1:16 PM
🏃🏿♀️ This #Thanksgiving, we're spotlighting Marion, #NMOSD patient, TSF Ambassador of Illinois, marathoner & believer.
Read "One Diagnosis, Three Marathons, Infinite Strength" - Marion's testimonial about how she will NEVER let #NMO defeat her: sumairafoundation.org/one-diagnosi...
#NeuroSky
Read "One Diagnosis, Three Marathons, Infinite Strength" - Marion's testimonial about how she will NEVER let #NMO defeat her: sumairafoundation.org/one-diagnosi...
#NeuroSky
🇨🇳 We welcome Dr. Fu-Dong Shi to join TSF’s international Medical Advisory Board as the 1st NMOSD/MOGAD expert from China to join our team.
He has expertise in the management of MS and related neuroinflammatory disorders. Learn more about Dr. Shi: www.sumairafoundation.org/welcome-dr-f...
He has expertise in the management of MS and related neuroinflammatory disorders. Learn more about Dr. Shi: www.sumairafoundation.org/welcome-dr-f...
March 11, 2025 at 1:33 PM
🇨🇳 We welcome Dr. Fu-Dong Shi to join TSF’s international Medical Advisory Board as the 1st NMOSD/MOGAD expert from China to join our team.
He has expertise in the management of MS and related neuroinflammatory disorders. Learn more about Dr. Shi: www.sumairafoundation.org/welcome-dr-f...
He has expertise in the management of MS and related neuroinflammatory disorders. Learn more about Dr. Shi: www.sumairafoundation.org/welcome-dr-f...
🇺🇸 On the final day of one of our special months, we are pleased to share the state proclamations officially declaring March 2025 as #NMO Awareness Month!🩷🧡💛 #NMOSD #TSFNMO2025
March 31, 2025 at 8:57 PM
🇺🇸 On the final day of one of our special months, we are pleased to share the state proclamations officially declaring March 2025 as #NMO Awareness Month!🩷🧡💛 #NMOSD #TSFNMO2025
🇪🇬 Dr. Ola Marzouk, a clinical pathologist at Cairo University, faced challenges with antibody tests for neuroimmunological diseases like #NMOSD & #MOGAD. She received a fellowship from TSF to train with Dr. @saramariotto.bsky.social
Read her story: www.sumairafoundation.org/dr-ola-marzo...
Read her story: www.sumairafoundation.org/dr-ola-marzo...
March 26, 2025 at 12:20 PM
🇪🇬 Dr. Ola Marzouk, a clinical pathologist at Cairo University, faced challenges with antibody tests for neuroimmunological diseases like #NMOSD & #MOGAD. She received a fellowship from TSF to train with Dr. @saramariotto.bsky.social
Read her story: www.sumairafoundation.org/dr-ola-marzo...
Read her story: www.sumairafoundation.org/dr-ola-marzo...
Shared decision-making (SDM) is when patients and providers work together on care choices. Learn the 5 building blocks to SDM and prepare for your next visit: www.sumairafoundation.org/side-by-side...
Watch TSF's Side-by-Side video series featuring Dr. Michael Levy & Marion (#NMOSD patient)
Watch TSF's Side-by-Side video series featuring Dr. Michael Levy & Marion (#NMOSD patient)
June 19, 2025 at 5:11 PM
Shared decision-making (SDM) is when patients and providers work together on care choices. Learn the 5 building blocks to SDM and prepare for your next visit: www.sumairafoundation.org/side-by-side...
Watch TSF's Side-by-Side video series featuring Dr. Michael Levy & Marion (#NMOSD patient)
Watch TSF's Side-by-Side video series featuring Dr. Michael Levy & Marion (#NMOSD patient)
April is MOGAD Awareness Month. I was originally diagnosed with NMOSD, but later with MOGAD. It’s a rare and often misunderstood condition. Here’s some info to help spread awareness:
www.sumairafoundation.org/wp-content/u...
www.sumairafoundation.org/wp-content/u...
April 21, 2025 at 11:56 AM
April is MOGAD Awareness Month. I was originally diagnosed with NMOSD, but later with MOGAD. It’s a rare and often misunderstood condition. Here’s some info to help spread awareness:
www.sumairafoundation.org/wp-content/u...
www.sumairafoundation.org/wp-content/u...
That's right, Ron Perlman, Paul Reiser & cast members from #TheAvengers #SOA #StarWars #TheSimpsons are comin' to town for 'A Combat Radio Christmas Carol' -a benefit for children battling #NMOSD we got your tickets to the show & one hell of an after party link below
www.youtube.com/watch?v=009t...
www.youtube.com/watch?v=009t...
Combat Radio's Christmas Carol for a Cure
YouTube video by Brigade-Radio-One
www.youtube.com
August 9, 2025 at 9:48 PM
That's right, Ron Perlman, Paul Reiser & cast members from #TheAvengers #SOA #StarWars #TheSimpsons are comin' to town for 'A Combat Radio Christmas Carol' -a benefit for children battling #NMOSD we got your tickets to the show & one hell of an after party link below
www.youtube.com/watch?v=009t...
www.youtube.com/watch?v=009t...
Ich habe zwischen den Infekten nicht mal genug Zeit, um aufzuarbeiten, was während dem letzten Infekt liegen geblieben ist, meine körperliche Fitness, meine normale Muskulatur ist komplett hinüber und mental pack ich das auch nicht mehr.
#NMOSD
2/2
#NMOSD
2/2
January 11, 2025 at 9:36 AM
Ich habe zwischen den Infekten nicht mal genug Zeit, um aufzuarbeiten, was während dem letzten Infekt liegen geblieben ist, meine körperliche Fitness, meine normale Muskulatur ist komplett hinüber und mental pack ich das auch nicht mehr.
#NMOSD
2/2
#NMOSD
2/2
Les 23-24 novembre 2024, The Sumaira Foundation France a organisé un week-end pour patients et aidants à Paris, en collaboration avec MIRCEM, pour échanger sur les maladies rares #NMOSD et #MOGAD.
www.sumairafoundation.org/recapitulati...
www.sumairafoundation.org/recapitulati...
December 20, 2024 at 2:54 PM
Les 23-24 novembre 2024, The Sumaira Foundation France a organisé un week-end pour patients et aidants à Paris, en collaboration avec MIRCEM, pour échanger sur les maladies rares #NMOSD et #MOGAD.
www.sumairafoundation.org/recapitulati...
www.sumairafoundation.org/recapitulati...
Conditions like #AE, #MOGAD and #NMOSD can cause spasticity and weakness, affecting mobility and daily tasks. Early diagnosis & treatment are crucial for symptom management & enhancing quality of life.
Learn about both directly from Dr. Barry Singer: youtu.be/a3QCaerCuPo?...
Learn about both directly from Dr. Barry Singer: youtu.be/a3QCaerCuPo?...
Spasticity & Weakness
YouTube video by The Sumaira Foundation
youtu.be
March 20, 2025 at 1:21 PM
Conditions like #AE, #MOGAD and #NMOSD can cause spasticity and weakness, affecting mobility and daily tasks. Early diagnosis & treatment are crucial for symptom management & enhancing quality of life.
Learn about both directly from Dr. Barry Singer: youtu.be/a3QCaerCuPo?...
Learn about both directly from Dr. Barry Singer: youtu.be/a3QCaerCuPo?...
Problemas de visão, fraqueza ou formigamento sem explicação?
Conheça a doença do espectro da neuromielite óptica (NMOSD), uma condição rara e autoimune que afeta principalmente mulheres entre 30 e 40 anos, afrodescendentes e asiáticas.
Conheça a doença do espectro da neuromielite óptica (NMOSD), uma condição rara e autoimune que afeta principalmente mulheres entre 30 e 40 anos, afrodescendentes e asiáticas.
May 13, 2025 at 4:07 PM
Problemas de visão, fraqueza ou formigamento sem explicação?
Conheça a doença do espectro da neuromielite óptica (NMOSD), uma condição rara e autoimune que afeta principalmente mulheres entre 30 e 40 anos, afrodescendentes e asiáticas.
Conheça a doença do espectro da neuromielite óptica (NMOSD), uma condição rara e autoimune que afeta principalmente mulheres entre 30 e 40 anos, afrodescendentes e asiáticas.
Bij het lezen over Uhthoff stuitte ik ook op de MS-hug. Deze heb ik vooral in februari en maart veel gehad. Hoewel MS niet is gediagnosticeerd, komt de hug dus ook voor bij transversale myelitis (bij mij NMOSD). Al vraag ik me af of het niet ook een vochtprobleem is. Niemand vertelt je toch nog wat?
April 27, 2025 at 5:31 PM
Bij het lezen over Uhthoff stuitte ik ook op de MS-hug. Deze heb ik vooral in februari en maart veel gehad. Hoewel MS niet is gediagnosticeerd, komt de hug dus ook voor bij transversale myelitis (bij mij NMOSD). Al vraag ik me af of het niet ook een vochtprobleem is. Niemand vertelt je toch nog wat?