Onze stichting gaat patiënten begeleiders steunen

Onze stichting is in bespreking met de ALS-patiëntenvereniging en zal op korte termijn over tot het financieel ondersteunen van begeleiders van ALS patiënten. Het doel van dit project is het verhogen van de kwaliteit van leven van patiënten met ALS door de palliatieve zorg beter te laten aansluiten op de ziekte-specifieke problematiek. De patiënt, naasten, verzorgers en hulpverleners zullen sneller en gemakkelijker worden voorzien van ALS-specifieke informatie en de communicatie en organisatie binnen de zorg […]

Supporting Efforts to PREVENT ALS

Smith Family Foundation offers a fundraising challenge to advance research to stop ALS before it starts. When Daniel Barvin learned he carries the C9orf72 gene expansion that causes Amyotrophic Lateral Sclerosis (ALS), he chose to learn as much as he could, because, he says, “knowledge is power.” Although he admits it was a shock to learn his life might not last as long as he thought, “sharing my story and building this community has made […]

Medical update

IMPORTANT FDA DECISION FOR NEW DRUG APPLICATION FOR ALS On March 29th, the FDA’s Advisory Committee voted 4 (yes) and 6 (no) that AMX0035 is effective in the treatment of ALS based on the data from the Phase 2 CENTAUR clinical trial. The committee’s recommendations are non-binding, and we continue to advocate for a timely approval given the acknowledged safety profile for AMX0035. Read more in our recently published editorial in the Annals of Neurology. […]

Tauroursodeoxycholic acid in the treatment of patients with amyotrophic lateral sclerosis

Tauroursodeoxycholic acid (TUDCA) is a hydrophilic bile acid that is produced in the liver and used for treatment of chronic cholestatic liver diseases. Experimental studies suggest that TUDCA may have cytoprotective and anti-apoptotic action, with potential neuroprotective activity. A proof of principle approach was adopted to provide preliminary data regarding the efficacy and tolerability of TUDCA in a series of patients with amyotrophic lateral sclerosis (ALS). Methods: As a proof of principle, using a double-blind placebo […]

First licensed stem cell therapy for ALS

CORESTEM launched the world’s first stem cell therapy for amyotrophic lateral sclerosis in South Korea in 2015. The company is now seeking out-licensing partners as it works toward product approvals in the US and Europe. CORESTEM is a biotechnology company specializing in the research and development of personalized stem cell therapies for neurological and autoimmune diseases. Its lead product is NeuroNata-R (lenzumestrocel), the world’s first stem cell-based therapy for amyotrophic lateral sclerosis (ALS). NeuroNata-R was […]