This study would not be possible without the access to clinical and laboratory resources provided by the study host organization, ALS Centre Moscow (Moscow, Russia), and the tireless support from the administration, the volunteers and the medical team of the Centre, including research assistant Dr. Marina Bialik, research assistant, music therapist Maria Pakosh (Ilchenko), research nurses Yana Batmanova, Sergey Korneychuk and Daria Puzanok, administrative director Anna Kasianova, coordinator Andrey Prokofiev, music therapist Ruslan Semenov, volunteer coordinator Ksenia Nazarova, and the medical director of the study Dr. Lev Brylev, who also served as a field supervisor for this study.
The author of this thesis is immensely grateful to all the external expert advisors who have helped to move this research forward: Dr. Richard Sloan at West Dorset MND Association (UK); Natalia Semina at Rehabilitation centre “Aprel” (Moscow, Russia); Dr. Jordan Green, CCC-SLP, at MGH Institute of Health Professions (Boston, USA); Dr. Emily Plowman, CCC-SLP, at the University of Florida (USA); Dr. Yana Yunusova, CCC-SLP, at the University of Toronto; Anastasia Beltukova, music therapist, at “Turmalin” (Moscow, Russia); Tina Georgievskaya, vocal coach (Moscow, Russia); Alex Sherman at the Neurological Clinical Research Institute at Massachusetts General Hospital (Boston, USA); Prof. Alfredo Raglio at University of Pavia (Italy); Victoria Edwards, SLT, Siofra Mulkerrin, SLT, and the MND team at Arthur Rank Hospice (Cambridge, UK); Dr. Kirill Gorbachev at Buyanov Moscow City Clinical Hospital (Moscow, Russia) and Dr. Vera Fominykh at Institute of Higher Nervous Activity and Neuropsychology (Moscow, Russia), Terri Handler and Dr. Matvey Lukashev at ALS TDI (Cambridge, MA, USA).
Indispensable for the research process was direct help with the research design and pseudonymized data analysis from Jufen Zhang, statistician from School of Medicine, Anglia Ruskin University (Chelmsford, UK), Zhanna Bottaeva, SLP, at Clinical and Research Institute of Emergency Pediatric Surgery and Trauma (CRIEPST); Dr. Ashley Waito, CCC-SLP, researcher at Bulbar Function Lab, Sunnybrook Research Institute (Toronto, Canada), Dr. Marziye Eshghi, CCC-SLP, researcher at Speech and Feeding Disorders Lab, Massachusetts General Hospital (Boston, MA, USA), Fyodor Soykin, IT specialist at Canopy Education Inc (Cambridge, MA, USA), Daria Ivanchenko, logopedist (Moscow, Russia), and Ekaterina Bruno, CCC-SLP (Dallas, USA).
A heart felt thank you to Dr. Alexander Street, music therapist and the first academic supervisor for this research project at Anglia Ruskin University, who provided continuous advice and support during all the stages of this research, and to Prof. Jörg Fachner, the second academic supervisor for this project, who helped to define the research subject and to formulate the study aims and design.
Above all, the author is grateful to all the research participants and their caregivers, as well as to Maria Gostintseva, Andrey Demidov, Pavel Andreev, Victoria Petrova, Sergey Borisenko, Anthony Carbajal and many other persons living with ALS, to ALS caregivers, volunteers and care specialists who have inspired this research.
This study was generously sponsored by The Stephen Hawking Foundation (UK), BOSE Corporation (USA), Remedywave (USA) and crowdfunding donations through Palliative Care Initiative (USA). Thank you.