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

17
experts

Leading specialists in the area of ALS research and treatment

Participants

Julia Ruszkiewicz

Julia Ruszkiewicz

Head of ALS Service Belarus, PhD
Elena Chudakova

Elena Chudakova

Lawyer for Live Now Foundation
Ayslu Asan

Ayslu Asan

Content Manager for Everland
Natalya Manukhina

Natalya Manukhina

Family psychologist

Professional Psychotherapeutic League of Russia

Natalya Lugovaya

Natalya Lugovaya

Director General

Live Now Foundation

Vera Demeshonok

Vera Demeshonok

Neurologist

American Medical Clinic & Hospital (Saint-Petersburg)

Jan Veldink

Jan Veldink

Geneticist

Head of Human Neurogenetics Unit, Utrecht Bioinformatics Center

Vadim Parshikov

Vadim Parshikov

Neurologist

Moscow Center of palliative care

Darya Hmelkova

Darya Hmelkova

Geneticist

Head of Bioinformatics Department, The Genetico medical center

Marya Kovalchuk

Marya Kovalchuk

Neurologist

Moscow City Clinical Hospital after V.M. Buyanov

Aynagul Mendalieva

Aynagul Mendalieva

Neurologist, Sports-medicine physician

April Rehabilitation Center

Anton Anpilov

Anton Anpilov

Psychologist
Dmitry Druzhinin

Dmitry Druzhinin

Neurologist

Specialist on diseases of the neuromuscular junction, Doctor of functional diagnostics

Thomas Meyer

Thomas Meyer

Neurologist, entrepreneur

Director of Charité Universitätsmedizin Berlin, ALS outpatient clinic

Merit Cudkowicz

Merit Cudkowicz

Neurologist, Clinical Researcher

Director of the Sean M. Healey & AMG Center for ALS

Lev Brylev

Lev Brylev

Neurologist

Head of Neurology Department Moscow City Clinical Hospital after V.M. Buyanov

Vasiliy Shtabnitskiy

Vasiliy Shtabnitskiy

Pulmonologist

Live Now Foundation’s expert

Program

Live stream will be available here

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. 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

11:20—12:00. Robotics technologies in ALS.

Thomas Meyer, neurologist, entrepreneur, Director of Charité Universitätsmedizin Berlin, ALS outpatient clinic


12:00—12:30. Coffee break


Section 1. ALS and Life

12:3013:30. 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. Results of new clinical researches and promising therapies.

Cudkowicz.Merit, Neurologist, clinical researcher, Director of the Sean M. Healey & AMG Center for ALS

17:20—18:00. Microbiome and ALS.

Dmitry Druzhinin, Specialist on diseases of the neuromuscular junction, Neurologist, Doctor of functional diagnostics


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. Hard choices web-site to help doctors.

Natalya Lugovaya, Director General of the Live Now foundation

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—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 patients.

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. ALS, love and family relations.


12:0012:30. Coffee break


12:30—13:10. Pecularities of special nutrition.

13:10—13:50. How disease changes relations between relatives.

13:50—14:30. Free Topic.


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

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    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

    Contact us

    Врачи Живи сейчас БАС
    Valeria Novikova
    on organisational matters
    education@alsfund.ru