Mission

We do all what is within our ability to change life of patients with ALS to the better, so that they would have access to the best possible aid.

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

Our values

  • People with ALS and their close ones and also their careers — they and all we do for them — it’s all in our hearts.
  • We’re opened for discussion and we value every personal input
  • We achieve the better through personal involvement and constant perfection
  • We respect and cooperate with people, despite their attitude, traditions, and belief systems
  • We achieve our goals through open and limpid communication with all sides.
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Documents and details

Full name: Charity Foundation for supporting people with ALS and other neuromuscular diseases LIVE NOW

Abbreviated name: LIVE NOW CF

Mailing address: Nizhegorodskaya st., 32 bld. 4, Moscow, Russia

Phone: +7 499 397 8443

E-mail: info@alsfund.ru

INN (Taxpayer identification number): 7719417621

KPP: 771901001

OKPO: 46504473

OGRN: 1157700009994

OKATO: 45263588000

Account number: 40703810601040000037

Transit account: 40703978601041000017

Currency account: 40703978301040000017

Bank name: ‘Tsentralny’ branch office of VTB Bank (JSC VTB Bank)

BIC: 044525411

Correspondent account: 30101810145250000411

General director: Olga Beketova

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.

Assistance centers

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Within this program we support medical institutions and social projects that help people with ALS. We’re raising funds to purchase rehabilitation equipment, dietetic therapy, breathing apparatuses etc., which are then supplied to the families. We provide financial support for careers’ services for unprivileged families and also consultations of certain specialists.

Educational projects and information

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We provide educational support for our specialists – doctors, nurses, community nurses, and family members. We publish information – online, leaflets, brochures. This is strong support with ALS being such a rare disease and almost nobody knows what to do and how to do it correctly.

Research

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It is still scientifically unclear why people develop ALS. There are no means to slower or stop disease progression. There is no accurate data in Russia concerning amount of people with ALS. It’s not always clear on how to manage symptomatic therapy properly. We run studies which could help us increase the quality of assistance to ALS patients. We also participate in international projects.

Increasing awareness

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The more people know about ALS problems the easier it will be to arrange help. We sponsor special informational projects with personal stories of people with ALS, arrange events to increase awareness and cooperate with the media through all year. June is typically the most active month — our ALS awareness month.

Volunteering

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Volunteers is the most important growth engine in any project. With ALS visiting volunteers are especially important. They regularly visit patients’ families and help organize tight interconnection between all structures. Amongst volunteers there are also musicians and artists who help patients to relieve stress. We organize such groups.

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.

FSBSI “Neurology scientific center”

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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