Mission

We do all we can to change life of patients with ALS to a better one, so that they would have access to the best possible aid.

We also do everything we can for the families and carers. Other than that, we promote studies that will lead to eradication of ALS.

Our values

  • Everything we do for people with ALS, their close ones and their carers we do from our hearts.
  • We’re open for discussion and we value every personal input.
  • We perform great due to our personal involvement and constant perfection.
  • We respect and work with people of all backgrounds, culture or religion.
  • We achieve our goals through open and transparent communication with all sides.
2018-annual-eng

Documents and details

Full name: Live Now charity foundation for supporting people with ALS and other neuromuscular diseases

Abbreviated name: Live Now Foundation

Mailing/Legal address: 41-10 Khersonskaya st., 117246, Moscow, Russian Federation

Actual address: 32, Nizhegorodskaya st., bld. 4, off. 117, 109029, Moscow, Russian Federation

Phone: +7 499 397 8443

E-mail: info@alsfund.ru

TIN: 7719417621

KPP: 772801001

OKPO: 46504473

OGRN: 1157700009994

OKATO: 45293590000

Account number: 40703978110050000013

Bank name: Qiwi Bank (Joint-Stock Company)

City, country: microdistrict Chertanovo, 1a bldg 1, Moscow, Russia, 117648

SWIFT: BELERUMMXXX

Genaral Director: Natalya Lugovaya

Our programs

We’re raising funds and provide help within five major foundations’ programs. Certain fundraising is focused either on the whole project, or on certain things.

ALS medical and social service

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Systematic and consistent efforts for improving the life of patients with ALS or other neuromuscular diseases are carried out under this program. The Fund supports patients and their families organizing good-quality care, medical and social assistance, promoting issues of public drug supply, offering medical and other equipment, providing psychological and informational support. We are helping medical and other organizations as well as social projects assisting people living with ALS or other  neuromuscular diseases. Interaction with state authorities is provided to develop and improve procedural legislation.

Educational Projects Program

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ALS is a rare disease, not many people who have faced with it know the proper way to organise health-care services. We support and encourage improvement of the professional qualification, training and internship of specialists (medical and paramedical personnel, ergoterapists, music therapists and psychologists etc.) who are working directly with people living with ALS and other neuromuscular diseases. We distribute guidances and backgrounders on ALS and Fund’s activities, elaborating brochures, booklets, leaflets as well as video and audio materials.

Research Program

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The programme provides financial assistance and conducts studies for the identification of causes of ALS disease, searching for a new care strategies and approaches to confront the symptoms of ALS.

Awareness-building Program

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Raising ALS awareness helps to scale up assistance for people living with ALS. Opportunity of forming public interest and drawing attention to the issue helps patients and their families cope with problems of living with ALS and other neuromuscular diseases. Forums, conferences, seminars, lectures, trainings, patient schools, round tables, debates and other cultural and educational events are organized. More information about ALS and details of Fund activities can be found on the website of the Organization als-info.ru.

Volunteer Program

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Volunteers are the main engine that drives our projects. This program tracks volunteer activities: engaging, adaptation, training, team building and coordinating of the volunteers willing to assist people with ALS (visitors, musical and art volunteers etc.), together with ones, who take an active part in Fund’s work.

Current causes

Our partners

Our foundation is opened for cooperation and shared projects — we participate in certain events, initiated by someone else and we also arrange some event together. We’re also members of some social communities and organizations, which helps us with our goals. Below we list our foundations’ partners — those are organizations and communities with whom we are constantly cooperating.

Research Center of Neurology

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Leading scientific and clinical neurology center in Russia, working with ALS for many years. In 6-th neurology department there are 300 ALS patients being monitored and treaded annually. The center runs studies of ALS causality, mechanisms, and new treatment options are being developed.

Moscow City Clinical Hospital after V.M. Buyanov

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The biggest general hospital in Moscow. It provides fulltime stationary, consultative, and diagnostic help to patients with wide range of diseases. The hospital includes in-patient facility with 828 beds (including day hospital), diagnostic center, inter-district department of multiple sclerosis and inter-district department of paroxysmal events.

Central clinical hospital of St. Alexis Metropolitan of Moscow

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The hospital situated in Moscow was established by Moscow Patriarchy. Here is provided free medical care to unprivileged and socially unsecure patients from different regions in Russia. Starting from 2016, palliative care department works and admits neurological patients. ALS Service in Moscow is based in St. Alexis hospital.

Orthodox help service “Miloserdie”

This name includes 26 social projects, 90% of which run on donations. Those projects comprise wide specter of patients: lonely senile citizens, adults and disabled children, orphans, homeless and all, who need support. This service includes charity program “Breath”, within which we are raising funds to provide assistant breathing equipment for people with ALS.

Hospice Care Professionals Association

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This association of professional members of hospice service is nonprofit organization, uniting both companies and people to achieve helpful goals in palliative medical care.

Our activities

3298
Units of dietetic therapy supplements distributed
1379
Patient visits
350
People attended our support groups
46
Resource conferences