MOTUS VITAAssociation of people with special needs

11th annual Nordic ALS/MND Conference

21-23 August, 2015

Jurmala, Latvia

Programme

Organiser and host organisation:

Society of people with special needs (ALS/MND)“Motus Vita”

Reg.nr.: 40008143545Address: Maskavas str. 421-18, Rīga, LV-1063E-mail: motus.vita@gmail.comWeb page: www.motusvita.lv Tel: 00371 29959106 (English)

00371 29571904 (Russian)

Held in co-operation:

Welcome to Jurmala!

Jurmala is the city by the Gulf of Riga stretching along 26 km of coastline with modern relaxation and resort facilities. It has become the largest resort area in the Baltics as well as a popular location for international conferences and meetings.

The city characterized by its wooden architecture with woodcut accents, cottage-style buildings and resort centers. The look of Jurmala in the 19th century and the beginning of the 20th century is its wooden houses with fascinating wood engraving decors in building facades and rooftop structures. The construction of Jurmala has historically formed along with the development of Jurmala resort, when many people – locals and foreigners – came to undergo a cure and relax. Romantic streets and wooden cottages surrounded by pine trees also nowadays create the vision of the olden days. The wooden buildings of Jurmala are significant and unique cultural heritage. Jurmala buildings are made unique by the fact that historicism-style wooden houses are quite rare. Wooden houses with their finely divided windows, verandas and rooftops are a Jurmala feature. Luxurious wooden buildings have extensive gardens, swimming pools, fountains and garden sculptures designed by noted architects. The old wooden building is preserved in Dzintari. These houses were built by affluent people, that is why the designs are ambitious and respectable. Dzintari is famous for the Dzintari concert stage, unique in Europe, which regularly hosts outstanding artists and ensembles. Harmoniously co-exist - Classicism, Art Nouveau, National Romanticism and Functionalism. The list of architectural monuments includes 414 buildings, but more than 4000 correspond to the status of the city’s historical buildings.

Jurmala is divided into 14 residential areas - Priedaine, Lielupe, Bulduri, Dzintari, Majori, Dubulti, Jaundubulti, Pumpuri, Melluži, Asari, Vaivari, Sloka, Jaunķemeri and Ķemeri.

There is the peace and quiet of Priedaine, and there is Jomas Street, the street in Majori always on the go, with its many little restaurants and diverse entertainment. Bulduri and Dzintari are classic Nouveau and contemporary summer-house districts. From Vaivari to Jaundubulti there are single-family homes with small summer cottages and reminiscences of Jurmala’s once-famed strawberry fields. Farthest west lies Kemeri – administrative centre of Kemeri National Park, with mineral water and curative and mud sources unique in the world, and outstanding nature trails.

The city’s beaches are its largest draw. Majori and Jaunkemeri beaches have received the Blue Flag, which means they are clean, safe and well-maintained. The Blue Flag beaches are especially popular with vacationers. At the beach you can hire paddle-boats and jet skis, play football and beach volleyball, or learn to windsurf. During the summer months, the ferry „New way” travels from Riga to Jurmala. The yacht clubs along the Lielupe offer yacht, boat, and water ski rentals. You can watch traditional rowing, sailing, and powerboat races. Fun can be had at the water park „Livu” and during the summer, the electromobile will get you acquainted with the city area. A bike ride is a good way to explore. Bird watching and bat and beaver observation excursions can be arranged. Rare and protected species can be seen in Kemeri National Park. Raga Dunes Nature Park is home to an 18,2 m high dune and 300 year old pines. The Jurmala City Museum invites you to get know the history of the resort, but in Jurmala open air museum – history of the one-time fishing village.

A summer stroll along Jomas Street is the best way to get acquainted with the rhythm of the city. The pedestrian walkway that stretches from Majori to Dzintari is full of restaurants and bars, and offers a great variety of menus from which to choose. The eateries offer Latvian, Russian, Ukrainian, Lebanese, Chinese, Thai, Indian, Mexican, Japanese, and other cuisines. The up-scale restaurants offer elegant interior design and special menus. The summer cafes are easy-going and reasonably priced. A wide selection of eateries offer grilled fish and meat dishes with chilled beer. With pleasure we await each and every visitor - whether you are staying for a moment or a few days or longer, to enjoy the sea breeze, the sun, nature, architecture and cultural life. Jurmala – the place to meet, the place for love, the place to come back to again and again.

Programme

Friday 21st August 2015

Location: SIVA Hotel Conference Hall

SESSION 1: Joint Opening Session

10.00-10.10 - Welcome Motus Vita Representative10.10-10.15 - Welcome SIVA director Ilona Jurševska10.15-10.25 - Welcome Latvian Health Ministry representative

SESSION 2: Professional session

10.30-10.45 - Doc. Viktorija Ķēniņa (Latvia) - Certified neurologist-immunologist and certified  neuro-sonologist Pauls Stradins Clinical University Hospital Clinic of Neurology-10.45-11.00 - Gleb Levitsky (Russia)- Russian Charity ALS Foundation- Modern views on the pathogenesis and treatment of ALS11.00-11.15- Natalya Martinukas (Russia)- Russian Charity ALS Foundation- Motor rehabilitation in ALS and neuromuscular diseases. Russian experience11.15-11.30-Dr. Baiba Lāce, (Latvia) geneticist - «Genetics issues about ALS/NMD»11.30-11.45-Dr. Inga Lokšinska, (Latvia) physiotherapist - «Physiotherapy at ALS/MND»11.15-12.00-Dr. Anna I. Hansen, (Norway)  Palliative nurse, Helsevesenet - «Palliative care for ALS/MND patients. Success and problems»

12.00-12.30 – Coffee Break

SESSION 3: Professional session part II

12.30-12.45 - Dr. Maruta Solvita Naudiņa, (Latvia), certified neurologist specialized in NMD12.45-13.00 - 13.00-13.45 - 13.45-14.00 -

14.00-15.00 -Lunch

SESSION 4: Fundrising 15.00-15.15 - 15.15-15.30 -15.30 -15.45 -15.45 -16.00 -16.00-16.15 -16.15-16.30 -

16.30-17.00 – Coffee Break

SESSION 5: Social and psychological support for patients with ALS/MND

17.00-17.15 - Ingrida Savicka,(Latvia) LMA Ķirurģiskās aprūpes māsu apvienības prezidente - The role of professional assistant in the life of ALS/MND patient17.15-17.30- Valērija Kozlova, (Latvia) Motus Vita Project manager- The role of creative work in a life of ALS/MND patients. Our experience.17.30 -17.45 - Kathy Mitchell, (Canada) Professor retired Algonquin College Ottawa Canada- Encouraging Hope  for families and people living with ALS-a health care team approach17.45 -18.00 - Anna Kašina, (Latvia) psychologist

19.00 – Dinner

Saturday 22nd August 2015

Location: SIVA Hotel Conference Hall

SESSION 6: Foreign and Latvian experience

10.00-10.15 - Jens Spanfelt, Muskelsvindfonden, (Denmark) «ALS/MND caregivers: Education and work in Denmark review »10.15-10.30 - Gudjon Sigurdsson, (Iceland) MND Association of Iceland. «ALS/MND situation in Iceland review »10.30-10.45 - Anne Heikkinen, (Finland)The Finnish Neuromuscular Disorders Association. «ALS/MND situation in Finland review »10.45 -11.00 -Dr. Antra Valdmane, (Latvia) Latvian health Ministry « ALS/MND situation in Latvia review »11.00-11.15- Dr. Andis Lācis,(Latvia) Riga Stradiņs University. «State program about rare diseases in Latvia»11.15-11.30 -11.30-12.00 -

12.00-12.30 – Coffee Break

SESSION 7: Challenges To Providing Services  12.30-13.00 - 13.00-13.30 - 13.30-14.00 -

14.00-15.00 -Lunch

15.00 - 16.30 - Poster Session 8 The creation of ALS/MND Center

Topic 1: Medical issue: treatment and supportTopic 2: Psychological issueTopic 3: Social issueTopic 4: Governmental supportTopic 5: Financial support

16.30-17.00 – Coffee Break

SESSION 9: Joint Closing Session

17.00-18.00 – Poster Presentation18.00-18.05 – Invitation to __________ 2016

19.30 – Grand Dinner

Location: Baltic Beach Hotel

Perle Hall

Sunday 23rd August 2015

Location:

10.00-14.00 - Excursion to Pure Chocolate museum with master class

http://www.purechocolate.lv/en/chocolate-museum/

14.00-15.00 Lunch (SIVA Hotel)