It is important to monitor the patient’s condition to prevent acute situations and provide timely assistance. To do this, we ask our patients to fill out and send symptom checkers every three months to coordinators and contact them in case if the patient’s condition changes in any way
How was the ALS Service started?
In Russia, it is almost impossible for people with ALS to get comprehensive care within the healthcare system after being diagnosed, so everything falls on the shoulders of relatives. Not all doctors have a good understanding of the specifics of ALS, especially in the regions, because the disease is rare. It is difficult to get help from a local state-funded medical center, so there is a need of a team of specialists able to provide qualified assistance and visit the patients’ homes. Such assistance is organized and provided by the Live Now Foundation within the framework of the ALS BAS Service program.
The first patient of ALS Service was Tatiana Machneva. We started providing assistance to her family in 2011 when the Service wasn’t founded yet, and there was only one coordinator working.
In 2011, Natalia Semina, a relative of a patient with ALS, and Lev Brylev, a neurologist, initiated the start of a project to help people with this diagnosis. The initiative was supported by the Mercy Orthodox relief service and in March 2012, regular work with ALS patients at home began on the basis of the Mercy medical center of the Marfo-Mariinsky Convent.
In 2015, relatives of people diagnosed with ALS initiated the founding of the Live Now charity foundation that helps to raise funds for the development of services for comprehensive assistance to people with ALS throughout Russia.
Medical assistance for people with ALS
For all the time the Service has been running, we managed to create a unique team for the Russian healthcare system that provides home care to people with ALS and their families. Patients who are registered with the ALS Service can get help.
Forms of assistance
Ongoing monitoring and symptom control
Online and in-person consultations with doctors and other specialists
People with ALS and their families can consult the following specialists for free:
- neurologist
- respiratory support specialist
- physical therapist
- occupational therapist
- nutritionist
- speech therapist
- psychologist
- specialist in nursing care
Patients from regions can get consultations from various specialists via e-mail or Skype
Outpatient care
Every month on Saturday, the foundation’s experts conduct outpatient appointments. This day people with ALS and their relatives can come and get consultations with various specialists: a neurologist, pulmonologist, physical therapist, speech therapist, nutritionist, psychologist and social worker.
Now the appointments are conducted online. The available dates are on the schedule page. You can schedule an appointment here
Nutritional care
It is important for people with ALS to follow a special high-calorie diet to maintain muscle mass. Manufacturers of this type of food, as well as private charity providers, regularly donate products for patients to the Fund. If you want to receive therapeutic nutrition, inform the coordinators. Meals are given out as they are transferred to the fund
Workshops for families and caregivers of people with ALS
For more information on nursing schools, see the page “Nursing school for Relatives”. To schedule an upcoming class, contact your coordinator. You can also watch the recordings of previous classes on the Foundation’s Youtube channel following the link
Assistance with the equipment
Requesting equipment from the government
As part of palliative care, by order of the Ministry of Health of the Russian Federation dated 31 May 2019, the government has undertaken to provide patients with the necessary equipment: invasive and non-invasive lung ventilators, cough assist machines, aspirators, adaptive electric beds, etc. Regional palliative care centers are required to provide the equipment once patients are registered with these facilities. Our Foundation specialists can advise and help to obtain the documents necessary for getting palliative care
Getting ventilators and cough assist machines
Expensive equipment, such as invasive and non-invasive lung ventilators, cough assist machines and consumables, can be obtained free of charge
Getting rehabilitation equipment
Strollers, beds, walkers, hygiene products, consumables, if they are available
Consultations on setting up NIV devices
Experts help to set up the device and follow up with the patient as planned
Getting equipment for communication
The fund has special means of communication for people with ALS: eye trackers, phrasebooks, communication tables, etc. The fund sends phrasebooks by mail, you can also get on the waiting list for an eye tracker
Social support to people with ALS
Our experts will help you to get an understanding of the subtleties of bureaucratic procedures to get all the state assistance that is legally required
Consultations on social welfare and paperwork
Specialists in social support will tell you what you need to do to get medical devices (strollers, walkers, etc.) and the necessary assistance from the government; how to register a disability and get an individual rehabilitation and habilitation program; where to apply for assembling a wheelchair ramp at the place of the patient’s residency.
To receive social assistance, you will need to obtain the required documentation and provide certificates about the disease to different departments. In order to act on behalf of a person with ALS who cannot handle the work, a relative can get a notarized power of attorney. A sample of the power of attorney can be found in the section “Helping people with ALS”. If you have any questions about the social services or a power of attorney, please contact our coordinators
Nurse aid
The ALS Service employs nurses who can occasionally (usually 8 hours a day, once a week) replace the relatives caring for the patient to give them time to rest or run some errands. Usually, the service of a nurse can be used 3-4 times per month. If you need a nurse to replace you for some time, please contact our coordinators. The service is available for residents of Moscow and the Moscow region
Assistance in registration for palliative care
In accordance with the law, people with ALS can be registered for palliative care and get all the necessary equipment purchased for them in the residency region. Unfortunately, sometimes doctors in state healthcare facilities have limited information about it. Our employees will tell you how to get help from your local palliative care facility
