Today is the World (anti-)ALS Day. It has been almost a year since this research has begun. And the most important news for today: the 6-week treatment stage is almost completed – and the results so far are encouraging (see my later posts for more)!
My gratitude and admiration for the courageous ALS fighters I have met are beyond the words. We work, despair, hope, rejoice together, side by side, and our labours bring the fruits. We will continue fighting. Will you help?
Nearly each step of this way feels surrealistic, unachievable , but then – miracles happen, here are our milestones so far:
“Neurologic music therapy for ALS”
Presentation for Addenbrookes Hospital MND Care Centre team at Arthur Rank Hospice, October 2017, Cambridge, UK
“Music therapy for PALS and CALS”
Information leaflet for care providers prepared and distributed
15th Allied Professionals’ Forum, MNDA Symposium, December 2017, Boston, USA
“Introducing music therapy in multidisciplinary team approach to ALS / MND care”
Presentation at Online Conference for Music Therapy, February 2018, online
The Stephen Hawking Foundation (UK) research grant
Received, December 2017
“Voice health guideline for people with ALS”
Information leaflet for people with ALS created and distributed (English, Russian), February 2018, online
BOSE Corporation (USA) research grant
Received, March 2018
“Researching music therapy protocol to support breathing, swallowing, speech and cough of people with ALS”
Presentation, IV ALS Patients’ conference, April 2018, Moscow, Russia
“Music therapy for people ALS”
In-service, music therapy group and research presentation, ALS Foundation support group, April 2018, Boston, USA
“How I became a “British scientist”: Clinical study of a music therapy protocol for people with ALS”
Presentation, IV Conference on Therapeutic Use of Music, May 2018, Moscow, Russia
And, looking forward:
“Eat. Speak. Breathe: Measuring the effect of music therapy protocol on bulbar functions of people with ALS”
Presentation, planned, Anglia Ruskin Music Therapy department PhD seminar, July 2018, Cambridge, UK
“Home-based music therapy in multidisciplinary care of people with amyotrophic lateral sclerosis”
Presentation for ALS care professionals, planned, Massachusetts General Hospital ALS Multidisciplinary Clinic, Boston, USA
“Music therapy for people ALS”
In-service, music therapy group and research presentation, ALS Foundation support group, planned, Boston, USA
“Music therapy for rehabilitation in multidisciplinary care of people with amyotrophic lateral sclerosis”
Abstract, accepted, XX Neurologic Congress with International Participation “Davidenkov Readings”, September 2018, St. Petersburg, Russia
“Music therapy as an integrated method of psycho-emotional and cognitive support in multidisciplinary care”
Abstract and presentation, accepted, The II Congress on Mental Health: Meeting the Needs of the XXI Century, October 2018, Moscow
“Music therapy in multidisciplinary ALS rehabilitation: research and practice”
Abstract accepted, presentation included into the program, 16th Allied Health Professionals’ Forum, MNDA Symposium, December 2018, Glasgow, UK
