- SMA Foundation - goals and missions
- SMA Foundation - educational conferences, projects, social campaigns
The SMA Foundation was founded by parents whose children struggle with spinal muscular atrophy. The Foundation's goal is to support patients with this rare genetic disease, as well as to raise public awareness of spinal muscular atrophy.
The SMA Foundationsupports patients with spinal muscular atrophy - a rare genetic disease whose essence is weakness and gradual muscle wasting.
SMA Foundation - goals and missions
The goal of the SMA Foundation is to support patients with spinal muscular atrophy by filling the information void regarding this severe disease. For this purpose, the Foundation, among others published an information brochure. In addition, the SMA Foundation supports patients by increasing the availability of diagnostic, treatment and rehabilitation methods and techniques, as well as products and technological solutions for people suffering from spinal muscular atrophy, as well as by counteracting exclusion, increasing independence and improving the broadly understood quality of life of patients. The Foundation also facilitates the exchange of experiences between patients, creates support and self-help groups.
The SMA Foundation also supports systemic solutions, in particular in the field of he alth care and social security, taking into account the needs of people suffering from spinal muscular atrophy and their relatives.
The goal of the SMA Foundation is also to increase social awareness of spinal muscular atrophy by organizing social and educational campaigns.
SMA Foundation - educational conferences, projects, social campaigns
SMA Foundation annually organizesWeekend with SMAconferences devoted to this rare genetic disease. TheSMA weekendconference is the second largest in Europe and the third largest in the world devoted to spinal muscular atrophy. At the conferences, you can listen to presentations by Polish and foreign specialists in the care of patients with SMA. Families with spinal muscular atrophy can participate free of charge.
The Foundation also carries out various projects aimed at increasing social awareness of spinal muscular atrophy. One of them is the project "COOL-awe circles from a preschooler", carried out in cooperation with the TPSW Foundation,the aim of which was to familiarize preschool children with the issues of physical disability. In turn, the aim of the "We are not alone" project was to provide multilateral educational and information support and to create permanent support mechanisms for Polish families with SMA, including many families with newly diagnosed children.
The Foundation is also the organizer of the "Muscles for Muscles" campaign. Its purpose is to promote knowledge about spinal muscular atrophy and to finance the Equipment Bank during sports events. As part of the campaign, the SMA Foundation establishes cooperation with teams and individual athletes ready to support patients with SMA. In 2014, the SMA Foundation had the honor of working with the American football team Warsaw Sharks.
Where to go for helpSMA Foundation - contact details
- phone: 22 350 02 02
- fax: 22 350 02 01
- e-mail: [email protected]
More information can be found on the SAM Foundation website: www.fsma.pl