Experts say that there are 10—15 thousand people with ALS in Russia. Often, they die without even knowing their diagnosis since this disease is very rare and many doctors can’t recognize it. In ALS medical and social service of Live Now Foundation people with ALS can get all the information about their disease and receive a personal consult with specialists. Within two weeks, the ALS service aid at least 70 families, who face ALS. These two weeks of work cost 1 200 000 rubles.
Dates of fundraising: January 2020
Donation purpose: To ensure stable work of ALS medical and social service for two weeks.
Description of the project
“Don’t be afraid of your diagnosis, don’t run and hide in your shell. People must be aware of this disease. But for this to happen, we must talk about it. This is the only way for people to become our voice when we lose ours.”
Nailya Bicculova, ALS patient
ALS or amyotrophic lateral sclerosis – is one of the most mysterious diseases of the XXI century. Why does it affect some and ignore others? How do we stop it? When will scientists finally develop a cure to a disease that is only so incomprehensible, but also so sophisticated in its cruelty?
ALS slowly kills motor neurons in human’s body. As a result, the muscle can’t interpret the signal that the brain sends. Fingers, hands and feet, neck, diaphragm, speech apparatus – all perish in the face of ALS. One’s mind is the only one left standing.
All thoughts, dreams, memories become trapped inside the body of a person, who now can’t move, talk and even breathe. However, a multidisciplinary approach and with support from the family a person with ALS can live a long and even a happy life.
Experts estimate there to be 10—15 thousand people with ALS in Russia. Often, they die without even knowing their diagnosis since this disease is very rare and many doctors can’t recognize it.
Live Now foundation is the only organization that provides systemic approach to people with ALS. The foundation has a free medical and social ALS service, which has around 900 patients attached to it from all over the country. For this service to provide stable and constant aid, we need your support.
In medical and social service people with ALS can get all the information about their disease and receive a personal consult with specialists.
ALS service provides monthly polyclinical appointments: within just one day a person with ALS can be consulted face-to-face by all ALS specialists – neurologist, respiratory therapist, dietician, speech therapist, ergotherapist and physical therapist, health visitor and a psychologist. Patients even from the furthest reaches of the country try to get at least one appointment, because it’s a unique opportunity for them to get a check-up (it’s not just about the fact that these appointments are free of charge, in Russia such services are not even commercially available), but also to meet other patients and realize – you’re not alone in this.
Two weeks of work are cost 1 200 000 rubles. This includes salaries of coordinators, who stay in contact with patients from all over the country and arrange all medical and social work on all receiving requests from patients; salaries of social workers, who helps getting a disability status, rehabilitation funds etc.; salaries of doctors; purchasing and service of medical ventilators, purchase of expendable materials, hygienic appliances, specialized nutrition.
Within two weeks of work, the ALS Service manages to help at least 70 families facing ALS. And we say families, because a multidisciplinary help to a person with an untreatable and progressive disease is not only about the patient, but also about his/her family, which has changed their entire lives, surroundings at house and regular activities.
Medical service can’t cure ALS, but we are doing everything in our ability for patients to know what’s happening to them. So that they won’t live with a feeling of a ground shaking beneath their feet. So that they knew they’re not alone. So that they could live to their last breath.
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