VIII ALS Annual Conference

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

11:20-11:40. Break

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

14:00-14:30. Lunch

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.

15:50-16:00. Break

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

11:40-12:00. Break

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

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

16:00-16:50. 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

16:50-17:00. Break

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).

18:00-18:30. Reception

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

11:40-12:00. Break

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.

14:00-15:00. Lunch

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”

16:50-17:00. Break

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

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

18:00-18:30. Reception