18.05 — 19.05
Ежегодная конференция по БАС живи сейчас
Conference 2022


The main expert event of the foundation, which has been taking place since 2016, serves as a unique platform for people with Neuromuscular Diseases and their loved ones to meet with medical specialists.

The conference will have two sections running simultaneously: one for patients and one for doctors. Simultaneous translation of the broadcast from English to Russian will be available.


of intense communication for specialists, people with ALS and everyone interested


in the field of study and treatment of ADHD by Russian and International experts


will be able to attend the conference in person after pre-registration (live streaming will also be available)


Thomas H. Bak

Thomas H. Bak

Cognitive neuroscientist
Sharon Abrahams

Sharon Abrahams

Professor of Neuropsychology
Elena Chudakova

Elena Chudakova

Lawyer for Live Now Foundation
Natalya Lugovaya

Natalya Lugovaya

Director General
Vadim Parshikov

Vadim Parshikov

Darya Hmelkova

Darya Hmelkova


Head of Bioinformatics Department, The Genetico medical center

Lev Brylev

Lev Brylev

Pavel Shestimerov

Pavel Shestimerov

Chairman of Family Council


May 18


10:00-10:40. “Live Now” Foundation’s Work, Projects, and Perspectives

Natalya Lugovaya, CEO of “Live Now” Charity Foundation

10:40-11:20. Results of Recent Clinical Trials

Vincenzo Silani, Professor of Neurology, Director of the Neurology Department and Neurology Laboratory at Istituto Auxologico Italiano in Milan, Scientific Director of the “Dino Ferrari” Centre for Neuromuscular and Neurodegenerative Diseases

11:20-12:00. International Clinical Trials in Russia

Speaker to be confirmed

12:00-12:40. Genetics of ALS. How to Interpret Genetic Testing Results?

Darya Khmelkova, Head of the Oncogenetics Department, Head of the Bioinformatics Department at the “Genetico” Center for Genomic and Regenerative Medicine 

12:40-13:20. Gene and Cell Therapy for ALS

Lev Brylev, Medical Director of “Live Now” Charity Foundation

13:20-14:30. Lunch

Section 1

14:30-15:20. Cognitive Impairments in ALS

Sharon Abrahams, Professor of Neuropsychology, Coordinator of Graduate Studies, Deputy Editor of the “Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration” Journal

15:20-16:00. Topic to be confirmed

Speaker to be confirmed

16:00-17:00. How Decision Making Process Changes in ALS

Thomas Jeranymus Bak, Associate Professor in Psychology at the University of Edinburgh, Research Scientist at the Centre for Clinical Brain Sciences and Co-Director of the Bilingualism Unit, Cognitive Neurobiologist

17:00-17:30. How a Psychiatrist Evaluates the Capacity to Make Decisions

Speaker to be confirmed

17:30-18:00. Discussion on Decision Making in ALS

17:30-18:00. Reception

May 19

10:00-11:00. Differential diagnosis

Speaker to be confirmed

11:00-12:00. Prognosis of the course of ALS and MND

Lev Brylev, Medical Director of the “Live Now” Foundation

12:00-13:00. Breathing disorders in ALS and ways to correct them

Speaker to be confirmed

13:00-14:00. Difficulties in organizing assistance in regions (center for neuromuscular diseases)

Mansur Kutlubaev, Doctor of Medical Sciences, Associate Professor, Acting Head of the Department of Neurology at the Bashkir State Medical University of the Ministry of Health of Russia, Chief External Neurologist of the Ministry of Health of the Republic of Bashkortostan

14:00-15:00. Lunch

15:00-16:00. Frontotemporal Dementia in Russia: Clinical Picture, Diagnostic and Treatment Options

Yulia Shpilyukova, Researcher, Neurologist, PhD, Federal State Scientific Center for Neurology, Moscow

16:00-17:00. Drug therapy for ALS in real clinical practice depending on the stage of the disease

Vadim Parshikov, Neurologist at the Moscow Multiprofile Center for Palliative Care’s Mobile Respiratory Support

17:00-18:00. Topic to be confirmed

Speaker to be confirmed

18:00-18:30. Reception

10:00-10:30.Complex Solutions” website to help patients.

Natalya Lugovaya, CEO of the “Live Now” Foundation.

10:30-11:00. Issues of legal capacity and delegation of authority.

Yelena Chudakova, lawyer for the “Live Now” Foundation.

11:00-12:00. Topic to be confirmed.

Speaker to be confirmed.

12:00-12:30. All about caring for seriously ill people. Home care school of the “Live Now” Foundation.

Anna Kozlova, home care nurse for the “Live Now” Foundation.

Elizaveta Karsakova, head of the Educational Projects for the “Live Now” Foundation.

12:30-13:20. Topic to be confirmed.

Speaker to be confirmed.

13:20-14:00. Use of sexual aids for people with disabilities.

Anna Grikevich, physical therapist, specialist in sexual health, founder of the female health platform bloomcare.ru.

14:00-15:00. Lunch.

15:00-16:00. Topic to be confirmed.

Pavel Shestimerov, chairman of the family council of the “Live Now” Foundation.

16:00-17:00. Topic to be confirmed.

Speaker to be confirmed.

17:00-18:00. Candid conversation: incurable diagnosis and physical intimacy.

Natalya Lugovaya, CEO of the “Live Now” Foundation.

18:00-18:30. Reception.

Исследования благотворительный фонд Живи сейчас

How to sponsor the conference

We can place a roll-up or a stand with product samples on the conference venue, place the company logo in the printed program and on the website, or suggest another form of participation. You can create an individual sponsorship package tailored to your goals and objectives.

Contact with us

Врачи Живи сейчас БАС
Valeria Novikova
10:00 - 19:00 (Moscow time)
+7(963) 663-46-69 education@alsfund.ru