FINNISH MS SOCIETY The Finnish MS Society (established in 1971) is a national non-governmental organisation promoting public health and the importance of physical exercise, and influencing decision-makers in the social welfare and health sectors in Finland as well as within the European Union. It influences the decision-making process within the EU through the European MS Platform (http://www.ms-in-europe.org), Euro-Ataxia (http://www.euro-ataxia.org) and European Organization for Rare Diseases (http://www.eurordis.org). It also cooperates with disability organisations in other countries. The Finnish MS Society looks after the interests of people with MS or progressive diseases of the spinal cord and cerebellum. This is still the main reason for the very existence of the organisation. The Finnish MS Society has a staff of 240 professionals. The Society has today 24 local chapters and approximately 75 clubs. The chapters have in all more than 10 000 members; about half of them are persons with MS or a rare neurological disease, and the rest are family members, health care professionals and others willing to help. Services One of the main objectives of the MS Society is to maintain the functional capacity of persons with MS. Society owns and runs The Masku Neurological Rehabilitation Center located near the city of Turku in Sout-western Finland. The rehabilitation center was bult in 1988. It offers persons with MS and their families a variety of rehabilitation and adaptation training facilities. Today the Centre offers accommodation for 87 patients. Each year, 1500 in-patients, a large percentage of whom have MS, come to the Centre for rehabilitation. The Outpatient Rehabilitation Centers in the cities of Tampere, Oulu and Kuopio arrange courses disseminating primary information. The Centers are experimenting with new open type of group rehabilitation models in cooperation with regional authorities of the social welfare and health sectors.
In the Service homes located in Seinäjoki and Lappeenranta people can learn to live on their own and obtain accommodation services. The MS Society also provides services helping persons with ms in employment. The Society has developed flexible employment methods making the employment of persons with MS easier . The Society's newsletter Avain - "The Key" - is published 7 times a year, and a cassette version is also available for persons wit visual impairment. The newsletter is distributed free of charge to all members, and it is also read by many professionals in the social welfare and health sectors. The Society also publishes brochures, handbooks and audiovisual material with information on disease and advice on how to cope with the disease. The MS Society has established the MS Foundation that encourages research in medical and nursing sciences of Multiple Sclerosis and rare neurological diseases in Finland. Each year various fundraising campaigns and joint projects are organised. Through these efforts funds are collected as well from private persons as from corporate source MS or multiple sclerosis – what is it? MS is a disease of the central nervous system causing progressive symptoms. Its cause is still unknown. The disease breaks out at the age of 20-40 years. MS may progress rapidly and cause difficulty of movements, but the disease can be almost symptom-free in many sufferers. The most common symptoms are an abnormally rapid loss of strength, muscle stiffness, balance difficulties, visual disturbances and urine incontinence. There are about 6000-7000 persons with MS in Finland. The "darkest" MS-areas are in South-Western and Western parts of Finland. Diseases of the spinal cord and cerebellum The rare progressive diseases affecting the spinal cord and cerebellum include ataxias, syringomelia, progressive spastic parapareses and polyradiculites. They cause variable difficulties of movement, tactile and vision disturbances, speech and swallowing difficulties. The causes of these diseases are still unknown , but some of them are hereditary, and the underlying genetic error has been identified in some of them. In Finland there are about 1 500 persons suffering from rare diseases of the spinal cord and cerebellum. Adult education (ICT training) provided by the Finnish MS Society Although they may not be the main activity of the Finnish MS Society, a variety of training courses are arranged every year. Our programmes includes courses in peer support, organisational activities and ICT. All training is based on the principle of lifelong learning. One learns through one's whole life - also after the active working period is over due to age or disability. . IT-classes for persons with ms are the latest development in our educational activities. People with disabilities – especially elderly people with disabilities - still lack ICT-skills and equipment. They may be retired due to the disability and have never used computers/internet in working life. This has left them behind when rest of the society has taken giant leaps in ICT. Personal computers are part of the everyday life of most people in work places and schools. If you are a senior citizen with disability living in rural part of Finland, you are even worse of. Broadband connections may not be available outside towns and the disability may set challenges in using personal computer. In june
2005 the Finnish MS Society started an ICT-learning project in Northern Finland. The project is called “HAAVE – electronic support network in rural finland”. It was granted funding from the European Social Fund (ESF). Microsoft corporation has donated funds and software to the project. Haave-project concentrates on helping people with disabilities in rural and economically challenged areas by training active members of local MS chapters in ICT skills. After the training these persons will work as “person to person -trainers” in rural and scarcely populated areas of Northern Finland. The objective of our project is – not only to increase computer literacy – but to teach people how to use computer and internet as a way of getting in touch with others in same situation. ICT can help overcoming the restrictions of low physical functioning to social support. A disabled person in rural area often finds it stressfull if not impossible to travel tens/hundreds of kilometres to club meetings with other disabled. Our goal is to show that meeting other people online is much easier. HAAVE-project started in april 2005 and it will last until march 2006. Project coordinator Anneli Vaara will join the international ICT50+ team in Kiel and you will have an opportunity to find out more about the project Contact information Anneli Vaara project coordinator HAAVE-project / Finnish MS Society Urheilukatu 5-7 FIN- 96100 ROVANIEMI gsm +358 40 737 4077 e-mail anneli.vaara@ms-liitto.fi Anssi Kemppi International Affairs Coordinator Finnish MS Society PO Box 15 FIN-21251 MASKU tel.+358 (0)2 4392132 GSM: +358 400 813 784 fax+358 (0)2 439 2133 e-mail: anssi.kemppi@ms-liitto.fi
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