Posted by: The Sumaira Foundation in MOG, Proche-aidant.e, Voices of NMO
Drogi Czytelniku – chciałabym podzielić się z Tobą naszą bardzo osobistą historią, która zmieniła życie moje i mojego męża. Bardzo bym chciała, żeby nasza historia była dla Ciebie przykładem nadziei i motywacji, abyś się nigdy nie poddał w poszukiwaniu ludzi, którzy będą mogli Ci pomóc i będę Twoim wsparciem. Bądź otwarty, pytaj i proś o […]
Read MorePosted by: The Sumaira Foundation in Nouvelles et annonces
June 14, 2023 — The Sumaira Foundation (TSF), a global patient advocacy organization focused on rare neuroimmune conditions, is delighted to announce Tim Walbert, chairman, president and chief executive officer of Horizon Therapeutics, as TSF’s Inaugural Global Rare Trailblazer Award recipient. The award was announced at the 6th Annual TSF Gala, recently held in Boston […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
Nel mese di marzo 2012 avevo appena trovato lavoro a più di 60 chilometri da casa ma era il lavoro per il quale avevo appena terminato gli studi ed ero determinata a fare il tragitto ogni giorno della settimana per andare in quel paesino di mare dove vivevano Alessandro, un ragazzo sordo dalla nascita ed […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
In February 2020, I started having weakness, numbness, burning, and pain on both sides of my body, starting with my feet but rapidly progressing to the rest of my body. When I would bend my head to look down, it would cause electrical vibrations down my body. My balance and coordination were completely off… I […]
Read MorePosted by: The Sumaira Foundation in MOG, Patient.e, Voices of NMO
On Monday, I woke up with a slight ache on the left side of my lower back which felt numb, like a bruise but without the pain. This numb spot would spread across my chest in the following days and become stronger. I woke on Thursday morning with pins and needles in both legs and […]
Read MorePosted by: The Sumaira Foundation in Media & Press, Nouvelles et annonces
“You have to grab life by the horns and enjoy every moment. Even if you’re not ill, you should do that!” April 7, 2023 — The Sumaira Foundation’s (TSF) first original short film NMO, Bonjour! has been selected into the official final shortlist at the World Health Organization’s 4th Health for All Film Festival, 2023. […]
Read MorePosted by: The Sumaira Foundation in NMO, Proche-aidant.e, Voices of NMO
Modern medicine in the United States was a complete failure. For six weeks, the hospitals, doctors, and many lab tests couldn’t piece a single clue together… It was 2018, and my fiancé had been to the doctors multiple times and was turned away from the ER three separate times. She was told she had the […]
Read MorePosted by: The Sumaira Foundation in Nouvelles et annonces
28 février 2023 – The Sumaira Foundation (TSF) annonce la création et le lancement de TSF France, apportant un soutien supplémentaire indispensable à la communauté française touchée par la NMO et la MOGAD. La Fondation Sumaira (TSF), organisation mondiale à but non lucratif dirigée par des Patients, est heureuse d’annoncer son essor en Europe avec […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
Bonjour à tous, je m’appelle Fatiha. J’habite à Étalleville en Normandie. Je suis tombée malade le 20 février 2016. Date anniversaire de la mort de mon père. Une double peine pour moi. Mon premier symptôme: une paralysie du côté gauche. J’ai été hospitalisée et mon état s’est dégradé très vite. J’ai perdu la vue, j’ai […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
Le 6 octobre 2014, le jour où ma vie a pris une nouvelle voie pour poursuivre son chemin. Le jour où j’ai commencé une cohabitation avec une maladie rare… À cette date, à 36 ans, la partie supérieure de mon œil gauche commence à voir de façon embrouillée. Six jours plus tard, mon œil ne […]
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