The 11th International Nordic ALS/NMD Alliance Conference

The 11th International Nordic ALS/NMD Alliance Conference took place on August 21 – 23, 2015 in Jurmala, Latvia. A welcome speech was delivered by Ms. Silvija Simfa, Deputy of the Saeima of the Republic of Latvia, Ms. Ilona Jursevska, Director of SIVA, Ms. Gunta Anca, Head of SUSTENTO and Vice-President of the European Disability Forum,...

The 11th International Nordic ALS/NMD Alliance Conference took place on August 21 – 23, 2015 in Jurmala, Latvia.

A welcome speech was delivered by Ms. Silvija Simfa, Deputy of the Saeima of the Republic of Latvia, Ms. Ilona Jursevska, Director of SIVA, Ms. Gunta Anca, Head of SUSTENTO and Vice-President of the European Disability Forum, and Mr. Valerijs Rakovs, Head of Society MOTUS VITA. The welcome letter from Latvian Minister for Welfare Uldis Augulis was read out to conferees.

Professional session was opened by Ms. Viktorija Kenina, Neurologist-Immunologist from Pauls Stradins Clinical University Hospital. Viktorija described the real situation with neuromuscular diseases in Latvia. Main problems, which patients face, were clearly stated and a system approach to solving these problems was offered.

Mr. Lev Brylev, Candidate of Medical Science, Head of ALS Service at the Martha-Mary Medical Center of Moscow, shared a useful work experience of multi-disciplinary team with patients of ALS.

The guest from Norway, Ms. Anna Hansen acquainted conferees with the Norwegian and Swedish experience in the sphere of ALS/NMD diseases and carried out a comparative analysis of these diseases. It was clearly shown that there is no universal model of support for people with ALS/NMD, and each country need to look for its own model, using a rich and positive experience of colleagues. Anna has kindly provided a very emotional and informative film “Arie’s life with ALS-Lou Gehrig’s disease”.

The way of how medical and social issues of patients with ALS/NMD diseases are resolved by our northern neighbors, was reported in details and visualized by Mr. Jüri Lehtmets, Member of the Board of the Estonian Muscular Dystrophy Association.

Believe it or not! – this was the thought that flashed into everyone’s mind, when listening to the report of young and very experienced scientist from Denmark Juris Klonovs – “Development of an adaptive and non-intrusive brain–computer interface ensuring independence for people with ALS/NMD diseases on the basis of machine learning methods”.

During his presentation, Dr. Juris Klonovs showed his inventions in the field of communications and biosignal processing allowing patients to operate mechanisms by means of brain impulses. Remote piloting a drone with pure brainwaves was demonstrated – truly impressive results from Juris’s collaborative work with Birger Bergmann Jeppesen from Denmark, who suffers from ALS for more than 20 years and who is completely paralyzed. Birger was able to see his surroundings and see his house and the garden from the bird’s eye perspective for the first time. Together they achieved considerable success. Without the use of muscular signals, it was succeeded to achieve almost complete control over a cobot (a collaborative robot arm).

After his speech, all ALS patients were invited to try out the presented invention – a prototype application allowing patients to control the computer via their brainwaves. During the break, Juris showed us how his creation works with the help of our Estonian guest Jüri Lehtmets – who decided to test the system and it worked! It was a fantastic performance!

Pretty saturated, interesting and varied was the block of performances on the subject: Services and programs for people with ALS/NMD.

Ms. Inga Šķestere, Head of the Association “Latvian Movement for Independent Living”, told about the value of social services in ensuring quality of life of people with functional violations and shared her practical experience in this field.

Mr. Arturs Lavrinovičs, Project Manager of SIA CILVEKS, and Mr. Aigars Lavrinovičs, Chairman of the Board of SIA CILVEKS, presented a report on the theme: Professional Assistant’s Role in Life of a Person with ALS/NMD Disease.

Ms. Baiba Ziemele, Member of the Board of the Latvian Alliance for Rare Diseases, told about the Alliance’s role and possibilities when solving problems of people with rare diseases, about problems and perspective of integration of this process into the Europe-wide movement of rare diseases.

When preparing for the conference we could not pass by such an important subject as a social and psychological support for patients with ALS/NMD diseases.

Latvian Psychologist Anna Kašina, who is well known as a specialist on a fairy tale therapy, presented an interesting report “Methods of correction of characterological disorders associated with the adoption of an incurable diagnosis”.

Professor Katie Mitchell from Ottawa Algonquin College (Canada), our honoured guest, read a very interesting presentation on the subject: The task of healthcare and social workers is to give hope and inspire patients with ALS/MND and their families. Conscious stress management as the way to cope with a situation for patients and members of their families.

This presentation provided food for thought and we hope that it will serve as guidance for workers of healthcare and social sphere.

Ms. Valerija Kozlova, MOTUS VITA Project Manager, made a report “The Role of Creativity in Life of Patients with ALS/MND”. Our experience.  There was clearly demonstrated the path of MOTUS VITA’s members starting from a small fine art project group to a full participant of international arts festivals. The whole experience of MOTUS VITA has proved the positive influence of creative process on health of its members.

And in the end of the conference there was the very important session for the majority of public organizations: Social Entrepreneurship.

Ms. Diana Lapkis, Director of “New Door Riga”, an expert in the field of project management and marketing, and Ms. Julija Balonova, an expert in the field of development, strategic planning and project financing, have presented a report “Social Entrepreneurship by Practical Examples”. This presentation was very vivid, illustrative and was followed by particular examples.

Dr. Liesma Ose, Professor and Head of the Latvian Community Initiatives Foundation, presented a report: “Social Entrepreneurship in Latvia: Short History”. It’s a pleasure when the report is based on the experience of particular people, people who create and bring particular benefits to the society.

Ms. Julija Kuznecova, an expert of working group under the jurisdiction of the Ministry of Welfare concerning social entrepreneurship issues, a PhD student (BA School of Business and Finance) studying social enterprises, Project Manager of the Entrepreneurship Development Fund (SUAF); “Analysis of Social Enterprises: the correlation between changes in the interpretation of the definition of social entrepreneurship and amount of social enterprises”. Her presentation gave people, who wish to prove themselves in the field of social entrepreneurship, an opportunity not to make mistakes at the initial stage.

Upon completion, the participants of the conference noted the high level of reports and topicality of provided information. The participants of the conference repeatedly emphasised that they have received ample food for thought and at the same time a positive impulse and a guide to action in the interests of people with ALS/MND diseases.