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
ALS Annual Conference - 2021
About the Conference
The Foundation’s leading expertise-sharing event held since 2016 has been a unique forum bringing together people with ALS, their families, and medical professionals. During the conference, patients and doctors will be able to participate in two parallel breakout sessions. In 2022, it will be 7 years since the launch of this event.
Simultaneous interpretation will be provided.
2
days
of interactive communication
200
participants
The conference will be livestreamed for those wishing to participate online
19
experts
Leading specialists in the area of ALS research and treatment
Participants
Yuriy Burghart
Physician, ambulance doctor, narcologist
Eugeniy Ermilov
Neurologist
Krasnoyarsk Regional Clinical Hospital
Julia Ruszkiewicz
Head of ALS Service Belarus, PhD
Elena Chudakova
Lawyer for Live Now Foundation
Ayslu Asan
Content Manager for Everland
Natalya Manukhina
Family psychologist
Professional Psychotherapeutic League of Russia
Natalya Lugovaya
Director General
Vera Demeshonok
Neurologist
Jan Veldink
Geneticist
Head of Human Neurogenetics Unit, Utrecht Bioinformatics Center
Vadim Parshikov
Neurologist
Darya Hmelkova
Geneticist
Head of Bioinformatics Department, The Genetico medical center
Marya Kovalchuk
Neurologist. Moscow City Clinical Hospital after V.M. Buyanov
Aynagul Mendalieva
Neurologist, Sports-medicine physician
April Rehabilitation Center
Anton Anpilov
Psychologist
Dmitry Druzhinin
Neurologist
Specialist on diseases of the neuromuscular junction, Doctor of functional diagnostics
Thomas Meyer
Neurologist, entrepreneur
Director of Charité Universitätsmedizin Berlin, ALS outpatient clinic
Merit Cudkowicz
Neurologist, Clinical Researcher
Director of the Sean M. Healey & AMG Center for ALS
Lev Brylev
Neurologist
Vasiliy Shtabnitskiy
Pulmonologist
Program
Live stream will be available on YouTube
Moscow Time (GMT+3)
May 26
Moderator: Daria Shubina — editor-in-chief of Vademecum.
10:00—10:40. The Live Now foundation’s work, projects and future prospectives.
Natalya Lugovaya, Director General of the Live Now foundation
10:40—11:20. Robotics technologies in ALS.
Thomas Meyer, neurologist, entrepreneur, Director of Charité Universitätsmedizin Berlin, ALS outpatient clinic
11:20—12:00. International clinical studies in Russia.
Lev Brylev, Head of Neurology Department Moscow City Clinical Hospital after V.M. Buyanov, Medical Director of the Live Now foundation
12:00—12:30. Coffee break
Section 1. ALS and Life
12:30—13:30. ALS and COVID-19.
Vasiliy Shtabnitskiy, Pulmonologist, Live Now foundation’s expert
13:30—14:00. ALS and communication.
Anton Anpilov, Augmentative and Alternative Communication specialist, April center of rehabilitation, Live Now foundation’s expert
14:00—14:30. ALS and physical exercises.
Aynagul Mendalieva, Neurologist, Sports-medicine physician, Moscow city clinic №19
14:30—15:20. Lunch
Section 2. ALS and the World
15:20—16:20. Genetics of ALS.
Jan Veldink, Geneticist, Head of Human Neurogenetics Unit, Utrecht Bioinformatics Center
16:20—17:20. Microbiome and ALS.
Dmitry Druzhinin, Specialist on diseases of the neuromuscular junction, Neurologist, Doctor of functional diagnostics
17:20—18:00. Ways to connect the Live now Foundation
Nikita Nikolaev, foundation’s technical specialist
18:00—18:30. Coffee break
May 27
Moderator: Lev Brylev, Head of Neurology Department Moscow City Clinical Hospital after V.M. Buyanov, Medical Director of The Live Now foundation
10:00—11:00. Differential diagnosis.
Marya Kovalchuk, Neurologist, Moscow City Clinical Hospital after V.M. Buyanov
11:00—12:00. ALS genetics for doctors. Results of full genomic sequencing of Russian patients.
Darya Hmelkova, Geneticist, Head of Bioinformatics Department, Genetico medical center
12:00—12:30. Coffee break
12:30—13:10. Morphine and benzodiazepines prescribing in addressing ALS in clinical practice.
Vadim Parshikov, Neurologist, Moscow Center of palliative care
13:10—13:50. Evaluation of functional state of ALS patients. ALSFRS-R scale, new Russian edition.
Vera Demeshonok, Neurologist, American Medical Clinic & Hospital (Saint-Petersburg), Live Now foundation’s expert
13:50—14:30. Respiratory support for ALS, indications for use, interaction with Palliative care centers, monitoring and customization of equipment.
Vasiliy Shtabnitskiy, Pulmonologist, Live Now foundation’s expert
14:30—15:30. Lunch
15:30—16:00. Results of new clinical researches and promising therapies.
Cudkowicz Merit, Neurologist, clinical researcher, Director of the Sean M. Healey & AMG Center for ALS
16:00—16:30. Difficulties to organize care for ALS patients in Russian regions by example of Krasnoyarskiy krai.
Eugeniy Ermilov, Neurologist, Krasnoyarsk Regional Clinical Hospital
Yuriy Burghart, Physician, ambulance doctor, narcologist
16:30—17:00. Situation with ALS in Belarus: diagnostics, organization of medical care.
Julia Ruszkiewicz, Head of ALS Service Belarus
17:00—17:30. “Hard choices” web-site to help doctors.
Natalya Lugovaya, Director General of the Live Now foundation
17:30—18:00.Panel discussion
18:00—18:30. Buffet
Moderator: Sofya Lys-Bakunina, ALS patients’ care specialist, Live Now foundation’s expert
10:00—10:30.“Hard choices” web-site to help doctors.
Natalya Lugovaya, Director General of Live Now foundation
10:30—11:00. State guarantees for patients with ALS. Legislative developments.
Elena Chudakova, Lawyer for Live Now Foundation
11:00—12:00. Travel experience and transportation for people with ALS.
Vitaly Gaydas, person with ALS
12:00—12:30. Coffee break
12:30—13:10. Psychological difficulties faced by people with ALS and their families. Personal experience and professional opinion as a psychologist.
Karina Klucheva, psychologist
13:10—13:50. How the disease changes the relations between relatives.
Alexander Shepetnev, person with ALS
13:50—14:30. Family, love and ALS.
Pavel Shestimerov, chairman of Foundation’s Families Council
14:30—15:30. Lunch
15:30—16:00. Disability and Work. Stories and opportunities.
Ayslu Asan, Content Manager for Everland inclusive project
Ulyana Zakharova, Psychologist for Everland inclusive project
16:00—16:30. Awareness, personal development, взгляд на себя со стороны.
Anna Lebedeva, Health Psychology specialist, senior researcher, HSE University
16:30—17:30. How to avoid emotional invalidisation in families.
Natalya Manukhina, family psychologist, member of Professional Psychotherapeutic League of Russia
17:30—18:00. Panel discussion.
18:00—18:30. Buffet
In case you want to receive information about new education projects on neuromuscular illnesses please let us know how we can get in touch with you.
Become a Sponsor of the Conference
Conference sponsorship opportunities:
- Placing your roll-up or stand with product samples at the conference venue
- Featuring your company’s logo in the printed conference booklet and on the conference website
- Other forms of participation
Benefits of cooperation with us
A company’s image
A company’s status as a sponsor adds to its reputation as a socially responsible business and projects a stronger company image
Marketing opportunities
You will be able to directly engage with the public on behalf of your company
Enhancement of corporate culture
Participation in socially important projects strengthens the staff’s commitment to the company
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