Эта конференция — наглядный пример эффективности мультидисциплинарного подхода к нашим пациентам, потому что каждый специалист представляет свой участок работы, и в комплексе это дает представление, как наиболее полно и правильно вести пациента с БАС
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)
Director of the Department of Neuroscience and Laboratory of Neuroscience at the IRCCS
Thomas H. Bak
Head of Bioinformatics Department, The Genetico medical center
Neurologist. Moscow City Clinical Hospital after V.M. Buyanov
Moderator. Sofia Prokhorchuk – Correspondent of the “Politics and Society” department of RBC
10:00-10:40. “Live Now” Foundation’s Work, Projects, and Perspectives
Natalya Lugovaya, CEO of “Live Now” Charity Foundation
10:40-11:20. International Clinical Trials in Russia
Maria Kovalchuk, Neurologist at Buyanov State Clinical Hospital
11:40-12:20. 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
12:20-13:00. Gene and Cell Therapy for ALS
Lev Brylev, Medical Director of “Live Now” Charity Foundation
13:00-14:00. 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
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
15:20-15:50. About the results of the study “Communication between doctors, volunteers and patients with ALS: problems and solutions”
Alexey Belyanin, Member of the HSE Academic Council, Head of the Laboratory of Experimental and Behavioral Economics, Associate Professor at the International Institute of Economics and Finance.
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
Maria Gantman, Gerontopsychiatrist, PhD, co-founder and consultant of the Altsrus Foundation for Helping Families of Patients with Dementia
17:30-18:00. Discussion on Decision Making in ALS
Moderator. Yulia Veseneva, expert of the Moscow School of Professional Philanthropy
10:00-11:00. Pain syndrome in ALS and methods of its correction (the view of a physical therapist)
Timur Ivanov, physical therapist, researcher at the Federal Center for Brain and Neurotechnologies, neurologist at the Aprel Rehabilitation Center
11:00-11:40. 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
Vasily Shtabnitsky, pulmonologist, expert of the “Live Now” charity foundation, Ph.D.
13:00-14:00. Neuropsychological aspects of ALS: asthenia and apathy
Mansur Kutlubaev, Doctor of Medical Sciences, Associate Professor, Acting Head of the Department of Neurology at the Bashkir State Medical University, Chief External Neurologist of the Ministry of Health of the Republic of Bashkortostan
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
16:00-16:50. 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. About the results of the study “Communication between doctors, volunteers and patients with ALS: problems and solutions”
Sergey Mokhov, PhD in Sociology, Researcher at John Moore University (Liverpool);
Anna Klepikova, Candidate of Social Sciences, Dean of the Faculty of Anthropology of the University of St. Petersburg, Associate Professor;
Anna Altukhova, Master of Anthropology, doctoral student at Humboldt University (Berlin).
Moderator. Natalia Drozd – PR specialist of the Live Now Foundation
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.
11:00-11:40. Education and socio-cultural adaptation in motor neuron disease. Considering personal experience
Vitaly Gaidas, person with ALS
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. Aspects of psychological support for ALS patients and their loved ones
Alexandra Evgenievna Yershova, psychologist, oncopsychologist of the Clear Morning Service for Cancer Patients and Their Loved Ones
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.
15:00-16:00. Making difficult decisions with ALS. Personal experience
Pavel Shestimerov, chairman of the family council of the “Live Now” Foundation.
16:00-16:50. Fear of death and living in the present
Maria Dambis, moderator of the international project Death Cafe – tea drinking in groups with conversations about experiences and reflections on the topic of death, curator of the project “Conversations over tea about losses”
17:00-18:00. Candid conversation: incurable diagnosis and physical intimacy
Natalya Lugovaya, CEO of the “Live Now” Foundation.
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.