Dragi naši prijatelji, Obraćam Vam se sa molbom da istrajete ne samo u borbi sa svojom bolešću nego i sa Covidom! Na samom početku smo svi mislili da će ovo proći ali pogrešili smo. Ovaj neprijatelj je kao i ALS potpuno nepredvidljiv. Morate istrajati u svakodnevnoj zaštiti, da ne dobijete COVID. Videćemo šta će biti […]
Dragi naši prijatelji – čuvajte se korona virusa! Read More »
Poštovani prijatelji, Čestitamo Vama i Vašim porodicama Novu 2021.godinu! Želimo Vam da Božić i Novu godinu provedete u krugu svojih porodica okruženi ljubavlju srećom i radošću.
SREĆNI PRAZNICI! 2021. Read More »
Udruženje za bolesti motoneurona Srbije je od MK Group dobilo i donaciju u oktobru 2020. Godine, od 10 000 evra, koju je iskoristila za nabavku dve nove NIV mašine Vivo 3 i Vivo 55 koje je Udruženje doniralo Kliničkom Centru Srbije za potrebe ALS pacijenata koji su ugroženi što se tiče disanja i kojima je
DONACIJA: MAŠINE ZA NEINVAZIVNU VENTILACIJU (NIV) Vivo 3 i Vivo 55 Read More »
In 2010, a few short months after my ALS diagnosis, I found myself having to rely full time on a rollator. I’ll be the first to admit I wasn’t happy at all. But now, nine years later, it’s become my ever-present silent buddy, and I can’t imagine my life without it! Are you struggling to
How I Learned to Love My Rollator Read More »
A first patient has been dosed in the Phase 2 trial investigating pegcetacoplan (APL-2), Apellis Pharmaceuticals‘ candidate therapy for amyotrophic lateral sclerosis (ALS), the company and the Swedish Orphan Biovitrum (Sobi) announced. The potentially pivotal trial, called MERIDIAN (NCT04579666), is currently enrolling patients at the Austin Neuromuscular Center. It aims to recruit 228 adults with sporadic ALS and symptom onset within the last 18 months at the Texas site,
Dosing Begins in Phase 2 Study of Pegcetacoplan in ALS Patients Read More »
BREN-02, a lab-made form of the human protein engrailed 1 (EN1), has been designated an orphan drug by the U.S. Food and Drug Administration (FDA) as a potential treatment of amyotrophic lateral sclerosis (ALS), its developer, BrainEver, announced in a press release. Orphan drug status is granted to stimulate the development of therapies aiming to prevent, diagnose, or treat disorders affecting fewer than 200,000 people in
BREN-02, Potential Restorative ALS Therapy, Named Orphan Drug by FDA Read More »
“I am a rock, I am an island, And a rock feels no pain.” In 2020, there have been none of Paul Simon’s “rocks” to be found in the social circles that I inhabit. Everyone that I know has endured suffering of one kind or another. Many folks’ pain is derived from multiple sources. Tomorrow is
Giving Thanks With 2020 Vision Read More »
Važne napomene : Poštovani pacijenti sa bolešću motoneurona i članovi porodica obolelih Borba sa virusom COVID 19 još uvek traje i obolelii od amiotrofične lateralne skleroze kao i ostalih oblika bolesti motoneurona još uvek su u grupi izuzetno rizičnih bolesnika . Potrebno je da se i dalje pridržavate predloženih mera zaštite od infekcije ovim virusom:
Epidemija virusom COVID 19, Maj 2020 Read More »
