Description
Project objective is to provide multi-dimensional education and information support and to create sustainable support mechanisms for at least 100 families suffering from spinal muscular atrophy. The project originated in response to problems voiced by potential participants: lack of information, sense of confusion and loss of direction, loneliness, alienation due to disability. Under the project, the first guide in Poland will be published and disseminated, a high quality training and integration conference will be organised (free of charge), a web-based info service will be developed (Advice Column) with focus on dealing with daily challenges. At the same time, foundations will be laid for a sustainable mutual support mechanism in the form an Internet discussion forum dedicated to living with SMA. The project is implemented in partnership with FSMA Iceland.
Summary of project results
"In Poland, the offer from public assistance bodies for persons affected by spinal muscular atrophy (SMA) is far from being sufficient. The condition is not even listed in the Register of Chronic Diseases of the Ministry of Health, which has negative consequences for availability of rehabilitation and integration assistance financed from public funds. Experiences of Polish patients and their families show that the knowledge on specificity of the spinal muscular atrophy is insufficient even among doctors. The aim of the project was to ensure wide-ranging educational and informational support and create permanent support mechanisms for persons affected by spinal muscular atrophy in order to prevent their loneliness and alienation. The families were trained in methods of care for persons with SMA, were given access to reliable information on the disease, its effects and methods to get along in the present legal conditions. They had opportunity to integrate and exchange experiences. A two-day training and integration reunion was organised with participation of lecturers from Poland and abroad (85 families - 260 persons - took part in the event). In cooperation with doctors, the first Polish guidebook for families coping with SMA was prepared and published (300 copies). An Internet information service helping to steer among the multitude of legal regulations was created. Launching discussion groups dedicated to problems of living with SMA (2 groups, 400 families from Poland and abroad) led to establishing a permanent mutual support mechanism. The project activities directly benefited persons with the spinal muscular atrophy and their families (85 families). Publicising of the materials prepared will enable the Grantee to reach more families, in particular those of persons freshly diagnosed with the disease. Cooperation with the partner, FSMA Iceland, let Grantee enhance their competencies as for the methods of communication with patients and their families, cooperation with the authorities, technical and legal solutions. During the training organised in Poland for the Foundation team, the partner presented their experiences and developed solutions. Cooperation was continued through regular phone conversations."
Summary of bilateral results
The project allowed the two organisations to share experience in a meaningful, structured way. The Icelandic Partner shared its priceless know-how, significantly enhancing our organisation's capacity to mobilise the community and work with government bodies. The Partner itself has received support in joining international umbrella organisations which resulted in a currently ongoing cooperation within those structures.