IX Annual International ALS Conference
«ALS Crossroads: From Diagnosis to Real-life help»

Moderator        Yulia Veseneva – expert at the Moscow School of Professional Philanthropy

09:30—10:00      Registration

10:00—10:30        Results of the fund’s work

Natalya Lugovaya – Live Now Charity Foundation CEO

10:30—11:00        Experience of respiratory support for ALS patients in St. Petersburg

Tima Stuchevskaya
PhD, head of Neurology Department, Assistant Professor
Neurology and Neurosurgery Department, Pavlov Medical University, Clinical Hospital #2, St. Petersburg, Russia
Co-authors: N. Sovetkina, N. Popovnina, A. Tsai, E. Bagaev, D. Rudenko
Clinical Hospital #2, Geriatric Medical Social Centre, St. Petersburg, Russia

11:00—11:30        Coffee break

11:30—12:00        Teglyutik. First ALS drug registered in Russia

Vera Demeshonok – PhD, neurologist Almazov National Medical Research Center, St. Petersburg, Russia

12:30—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—13:25         Questions and answers

13:25—14:15         Lunch

14:15—15:00         Motor Neuron Disease forms: symptoms, laboratory tests, genetics, MRI

Monika Povedano – Professor, ALS division coordinator, Neurology department, Hospital Universitari de Bellvitge, Spain

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

Vladimir Nazarov – PhD, head of laboratory for molecular diagnostics, Russian Healthcare scientific and methodological center for molecular medicine, Pavlov State Medical University, St. Petersburg, Russia

16:00—16:45        MND phenotypes discussion. Summing up the results of the first day of the conference

Discussion Moderator Brylev Lev –neurologist, PhD, medical director, Live Now Charity Foundation All the leсturers and participants are kindly invited to take part in the discussion.

Moderator     Yana Mazitova – Social Work Specialist, Hospice, Ufa, Russia

10:00—10:15       Greeting of the participants

Aleksander Volkov, Head of educational projects, Live Now Charity Foundation

10:15—11:00        Motor Neuron Disease cases which are hard to diagnose

Maria Kovalchuk – Neurologist, Neurophysiologist, V. M. Buyanov Moscow State Hospital, Moscow, Russia

11:00—11:30        ALS mimicry

Oybek Turgunkhujaev – Neurologist, Movement disorders specialist A. I. Burnazyan Federal Medical Biophysical Center, Moscow, Russia

11:30—12:00        Coffee Break

12:00—12:30        Gold Coast Criteria in MND diagnosis

Olga Gilvanova – Functional Diagnostics Specialist, head of neuromuscular pathology center, Loginov Moscow State Scientific Center, Moscow, Russia

12:30—13:00        US and ENMG role in ALS diagnosis

Anna Smirnova – Neurologist, Functional Diagnostics Specialist Almazov National Medical Research Center, ASKLIN Association for Specialists in Clinical Neurophysiology, St. Petersburg, Russia

13:00—13:30        Respiratory support in Neuro-muscular diseases (Emphasizing ALS and SMA)

Vasily Shtabnitsky – PhD, Pulmonologist, Live Now Charity Foundation Expert, Hadassah Medical Center, Jerusalem, Israel

13:30—14:15        Lunch

14:15—14:40        When is it time for palliative care and how to get it?

Pavel Burykin – Leading expert of palliative care organization, Vera Charity Foundation, Moscow, Russia

14:40—15:05        What challenges do patient meet when they need palliative care? How can a physician help?

Anastasia Ermolenko – Social Service Specialist, Live Now Charity Foundation

15:05—15:35        Peculiarities of palliative help and respiratory support for ALS patients, Krasnoyarsk Region experience.

Burgart Yuri – Leading Palliative care specialist of Krasnoyarsk Region, head of Out-patient Palliative care service, Krasnoyarsk Interdistrict Hospital#2

15:35—16:00        Coffee Break

16:00—18:00        Round Table with specialists from Russian regions

Moderator        Natalia Drozd, PR specialist, Live Now Charity Foundation

10:00—10:15        Greetings of the participants

Natalya Lugovaya – CEO, Live Now Charity Foundation

10:15—10:45        Sexual life of ALS patients

Anna Grikevich – Physical Therapist, specialist in the pelvic region and sexual health, founder of the women’s health platform https://bloomcare.ru

10:45—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        Coffee Break

12:00—12:30        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 Rehabilitation Center, ALS Healthcare Service on the base of St. Petersburg

12:30—13:00        Master class on enteral nutrition. What patients need it and when? Which Nutritional supplements to choose?

Daria Romanova – nurse practitioner, Live Now Charity Foundation

13:00—13:30        When your loved one has ALS. Personal experience

Regina Nurgalieva – Live Now Charity Foundation Coordinator, ALS Patient’s daughter

13:30—14:15        Lunch

14:15—14:40        When a Patients needs palliative Care and how to get it.

Anastasia Lavrentieva – Head of Help at Home Service Project, Vera Charity Foundation, Moscow, Russia

14:40—15:05         Long term care system

Kagitin Andrei – Head of Project Center for Long Term Care System Implementing, Old Age is a Joy (Starost’ v Radost’) Charity Foundation, Russia

15:05—15:35        Importance of support and guidance for patients and their families throughout all the disease stages. Who are end-of-life doulas?

Anna Kozlova – Homecare nurse, Live Now Charity Foundation

15:35—16:00        Coffee Break

16:00—16:20        Personal experience of Tofersen treatment in Israel

Natalia Slioussar – ALS patient

16:20—16:25        Questions and Answers

16:25—16:45        ALS as your opportunity to mobilize your internal personal resources

Vitaly Gaidas’ – ALS patient