The “Live Now” charity foundation, which provides critical support to individuals with amyotrophic lateral sclerosis (ALS) and their families, is facing a severe financial crisis due to millions of rubles in debt. This jeopardizes the organization’s ability to continue providing essential services to those affected by this rare and debilitating disease.
The foundation currently supports 1,061 individuals across Russia, including 38 in St. Petersburg and the Leningrad region. It has been a vital resource, having assisted over 5,000 families in the past decade and pioneered the country’s first ALS support service.
The foundation’s contributions extend to training thousands of medical professionals and significantly enhancing palliative care and neurology for rare diseases nationwide.
“Live Now” offers a range of crucial services, including providing life-sustaining equipment like ventilators and cough assist devices, access to specialized medical consultations often unavailable in regular hospitals, socio-legal support to navigate benefits and government assistance, and educational programs for healthcare professionals.
The foundation’s director, Natalia Lugovaya, emphasizes the urgency of the situation, stating that a decade of systematic support for ALS patients in Russia is now at risk due to funding shortages. She highlights the immediate need for assistance to maintain these vital services.
The current debt stands at 7.3 million rubles, with an additional 11.4 million rubles required to sustain current service levels for the next six months.
Oleg Neruchek, whose wife was diagnosed with ALS, attested to the invaluable advice and practical support received from the foundation, including specialist consultations and essential equipment.
“Live Now” relies on private and corporate donations, as well as grants, but these sources are often insufficient and unstable, struggling to keep pace with the growing demand for services. The foundation constantly operates on a tight budget, striving to maintain its team while cutting costs.
ALS is a progressive neurodegenerative disease that leads to paralysis and muscle atrophy, with patients gradually losing the ability to move, speak, swallow, and breathe. While the typical progression from initial symptoms to complete decline is three to five years, some individuals can live much longer.
The foundation operates across Russia, including the DNR and LNR, and actively engages in research, develops clinical guidelines, and shapes policies to improve care for neuromuscular patients at the federal level. In 2023, seven cooperation agreements were signed with regions to facilitate data exchange with regional health ministries, and 15 training schools were conducted for specialists nationwide.