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 conference dates
Oct, 3rd — Oct, 4th 2024
Russia, Moscow, the precise address will be announced later
About the conference
The annual ALS conference is the expert event held by Live Now Charity Foundation since 2015. This conference is a great opportunity for neurologists, pulmonologists, physical therapists on one side and people living with ALS on the other to meet, communicate and share their experience of dealing with this dreadful disease.
68 speakers and more than 1200 participants form previous conferences admit
- How essential it is to get and share the most up-to-date information on neuro-muscular diseases.
- That the professional level of speakers is very high.
- How important it is that professionals from leading Russian medical centers in Moscow and Saint Petersburg meet with foreign specialists to do their best to help ALS patients.
We consider and pay great attention to the questions and interests of all the participants. That’s why we organize various sections: round table discussions, masterclasses and sections of informal communication.
Two sections are available for the participants at the conference: for patients and for medical specialists. All the lectures of English-speaking specialists will be simultaneously translated into Russian.
2
days
of intensive cooperation for specialists, people living with ALS and for all who want to learn more about neuro-muscular diseases
25
reports
in the field of research and therapy of ALS from Russian and international experts
>200
participants
will be able to attend the conference in person after pre-registration (live streaming will also be available)
2
formats
offline and online
>20
speakers
from Russian and foreign leading medical centers
Speakers
Angelo Vescovi
Full Affiliate Professor of Neurology
Houston Methodist Institute for Academic Medicine, USA. Founder and Chief Strategic Officer, StemGen Spa, Milan, Italy and HyperStem SA, Lugano, CH.
Ordinary Member, Pontifical Academy for Life, State of Vatican City
Natalia Lugovaya
CEO
Charitable Foundation «Live Now»
Marya Kovalchuk
Neurologist
Moscow City Clinical Hospital after V.M. Buyanov
Vera Demeshonok
PhD, neurologist
Almazov National Medical Research Center, St. Petersburg, Russia
Alla Shabalina
Doctor of Medical Sciences, Leading Researcher, Head of Laboratory Diagnostics Department
Scientific Center for Neurology of the Russian Academy of Medical Sciences
Vasily Bryukhov
PhD, senior researcher, radiologist
Research Center of Neurology, Moscow, Russia
Olga Gilvanova
Functional Diagnostics Specialist, head of neuromuscular pathology center
Loginov Moscow State Scientific Center, Moscow, Russia
Anna Smirnova
Neurologist, Functional Diagnostics Specialist
Almazov National Medical Research Center, ASKLIN Association for Specialists in Clinical Neurophysiology, St. Petersburg, Russia
Vasily Shtabnitsky
pulmonologist
Medical Clinic “Gull”
Anna Kozlova
Homecare nurse
Live Now Charity Foundation
Tima Stuchevskaya
PhD, head of Neurology Department, Assistant Professor
Neurology and Neurosurgery Department, Pavlov Medical University, Clinical Hospital #2, St. Petersburg, Russia
Olga Makarova
Speech therapist
Sputnik in Komarovo Rehabilitation Center, St. Petersburg, Russia
Anna Grikevich
Physical therapist, pelvic floor and sexual health specialist
Founder of the women’s health platform Bloom
Timur Ivanov
Physical Therapist, Neurologist
Researcher, Federal Research Center of Human Brain and Neurotechnology,
Aprel Rehabilitation Clinic, Moscow, Russia
Tatyana Khotyakova
Head of speech therapy service
Sputnik in Komarovo Rehabilitation Center, ALS Healthcare Service on the base of St. Petersburg Association of Public Institutions for Parents of Children with Disabilities, St. Petersburg, Russia
Anastasia Petrokovskaya
Neurologist
Neuromuscular pathology center, Loginov Moscow State Scientific Center, Moscow, Russia
Lev Brylev
Consultant neurologist, medical director of the Live Now Foundation
Abu Dhabi Stem Cell Center
Program
2024 Conference program
October 3rd
Moderator: Yulia Veseneva – expert at the Moscow School of Professional Philanthropy
09:30. Registration
10:00—10:15. Introduction
Board of Trustees/Ministry of Labor
10:15—10:35. Results of the fund’s work
Lugovaya Natalya – Live Now Charity Foundation CEO
10:35—11:05. Experience of respiratory support for ALS patients in St. Petersburg
Stuchevskaya Tima – PhD, head of Neurology Department, Assistant Professor
Neurology and Neurosurgery Department, Pavlov Medical University, Clinical Hospital #2, St. Petersburg, Russia
11:05—11:25. Lecture is under consideration
The speaker will be announced later
11:25—11:45. Coffee break
11:45—12:15. «Tofersen»: treatment results and perspectives
Brylev Lev – candidate of medical sciences, medical director of the Live Now Charitable Foundation
12:15—13:15. Stem cells in the treatment of ALS
Angelo Vescovi – Professor of Cell Biology in the Department of Biotechnology and Biological Sciences, Chief Professor of Neurology at the Houston Methodist Institute of Academic Medicine in the USA; Founder and Chief Strategic Officer of StemGen Spa – Milan, Italy and HyperStem SA – Lugano, Switzerland; Permanent Member of the Pontifical Academy for Life, Vatican State
13:15—13:30. Questions and answers
13:30—13:45. Educational projects for specialists. Presentation of the updated als-info.ru portal
Volkov Alexander – head of educational projects, Live Now Charitable Foundation
13:45—14:30. Lunch break
14:30—15:00. Phenotypes of motor neuron disease
Demeshonok Vera – PhD, neurologist, Almazov National Medical Research Center, St. Petersburg, Russia
15:00—15:30. The role of MRI in motor neuron diseases
Bryukhov Vasily – PhD, senior researcher, radiologist
Research Center of Neurology, Moscow, Russia
15:30—16:00. ALS Biomarkers
Alla Shabalina – PhD, Head of Laboratory Diagnostics, Leading Researcher, Research Center of Neurology, Moscow, Russia
16:00—16:15. Break
17:30—18:00. MND phenotypes. Summing up the results of the first day of the conference
Brylev Lev – neurologist, PhD, medical director, Live Now Charity Foundation
Demeshonok Vera – PhD, neurologist, Almazov National Medical Research Center, St. Petersburg, Russia
October 4th
Moderator: Yulia Veseneva – expert at the Moscow School of Professional Philanthropy
10:00—10:15. Introduction
Board of Trustees/Ministry of Labor (need to be confirmed)
10:15—11:00. Diagnostically difficult cases of motor neuron disease
Kovalchuk Maria Olegovna – PhD, Candidate of Medical Sciences, Head. Neurological Department No. 1 of the City Clinical Hospital named after. V.M. Buyanova
11:00—11:30. International and Russian recommendations on ALS
Brylev Lev Vadimovich – candidate of medical sciences, medical director of the “Live Now” Charitable Foundation
11:30—12:00. The role of ultrasound and EMNG in the diagnosis of ALS
Smirnova Anna Yuryevna – neurologist, functional diagnostics doctor at the Federal State Budgetary Institution National Medical Research Center named after. V.A. Almazova, Secretary of the Association of Clinical Neurophysiology Specialists ASCLIN, St. Petersburg
12:00—12:10. Answers on questions
12:10—12:30. Coffee Break
12:30—13:00. Respiratory support for neuromuscular diseases (focus on DMD and SMA)
Vasily Andreevich Shtabnitsky – Ph.D., pulmonologist, expert of the “Live Now” Charitable Foundation
13:00—13:30. The topic of the report is being specified
Ermolenko Anastasia – social issues specialist at the Live Now Charitable Foundation
13:30—13:45. Lunch Break
13:45—16:00. Round table with regional experts
Модератор: Drozd Natalya – PR specialist, Live Now Charitable Foundation
10:00—10:30. Support from the Live Now charity foundation. Personal experience
Regina Nurgalieva – ALS service coordinator, Live Now Charitable Foundation, ALS patient’s daughter
10:30—11:00. Master class on positioning of a patient using sliding sheets
The speaker will be announced later.
11:00—11:30. Difficult aspects of physical therapy in patients with ALS
Ivanov Timur – Physical Therapist, Neurologist
Researcher, Federal Research Center of Human Brain and Neurotechnology,
Aprel Rehabilitation Clinic, Moscow, Russia
11:30—12:00. Swallowing and speech problems in ALS: recommendations from a speech therapist
Olga Makarova – Speech therapist, Sputnik in Komarovo Rehabilitation Center, St. Petersburg, Russia
Khotyakova Tatyana – Head of speech therapy service, Sputnik in Komarovo
12:00—12:30. Coffee Break
12:30—13:00. Personal experience of Tofersen treatment in Israel
Natalya Slyusar – ALS patient
13:00—13:30. The topic of the report is being specified
Grikevich Anna – physical therapist, specialist in the pelvic region and sexual health, founder of the women’s health platform https://bloomcare.ru
13:30—14:10. Lecture is under consideration
Grikevich Anna – physical therapist, specialist in the pelvic region and sexual health, founder of the women’s health platform https://bloomcare.ru
14:10—14:40. End of life doula
Anna Kozlova – nurse, Live Now Charity Foundation
14:00—14:45. Lunch Break
14:45—15:20. All about gastrostomy
Anna Kozlova – nurse, Live Now Charity Foundation
15:20—16:00. Master class on enteral nutrition. What patients need it and when? and which Nutritional supplements to choose?
Anna Kozlova – nurse, Live Now Charity Foundation
Registration
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 us
Специалистам необходимо встречаться на таких мероприятиях. Мы все заняты своим профилем, а здесь мы можем увидеться лично, обменяться информацией и наметить шаги по сотрудничеству. Кроме того, это консолидация экспертов и сообщества людей с БАС. Потому что продуктивное развитие этой темы возможно только в тесном сотрудничестве
Уже во время конференции, у меня возникали различные идеи, которые можно реализовать в нашем регионе. Приеду — буду воплощать их в жизнь. Ежегодная конференция по БАС фонда “Живи сейчас” — кладезь знаний, здесь выступали великолепные специалисты, которые затронули разные темы: в том числе, как привлекать патронаж, волонтеров. Конференция объединила всю информацию в единое целое, и от этого выиграют наши пациенты