Flemish association neuromuscular disorders (Nema) Haarbemdenstraat 55/13500 Hasselt0483/397474[email protected]Website: www.nema.be About Nema and ataxia Nema is the association for neuromuscular disorders for the Flemish (northern) part of Belgium. There is a similar association for the French-speaking Belgians in the southern region of Belgium: ABMM (l’Association Belge contre les Maladies neuro-Musculaires) www.abmm.be . The ataxiagroup is one of the so-called “diagnostic groups” existing under the umbrella of Nema. In the past there was a separate association for Friedreich’s ataxia but there are so many common interests for all neuromuscular disorders and in a small country as Belgium every single neuromuscular disorder is (luckily) represented by only a small number of patients. So it was rather appropriate to group these rare disorders in one association. Furthermore, the diagnostic ataxia group does not only help people with Friedreich’s ataxia, but also people suffering from other ataxias, such as the SCA’s, ataxia telangiectasia, episodic ataxias, etc. Based on the prevalence of ataxia in other countries, there must be about 400 to 600 people affected with ataxia in Belgium, of which Friedreich’s ataxia is the most common ataxia. Who are we? Nema is an organization of volunteers which was created in 1987 to unite and organize people with a neuromuscular disease in order to improve their welfare. Nema has two part-time project employees, one who does redactional work, e.g. magazine, website, brochures, organization of Nema activities and one who stays up-to-date on medical developments and who maintains contacts with other patient and governmental organizations as well as with the neuromuscular reference centers, fundraising… Nema stands for the solidarity principle: our association unites people with whatever neuromuscular disorder, but also parents, other family members, partners, friends, professionals or other people concerned. Patients in our association represent about 50 different diagnoses, each with their own specific profile but with many fields of mutual interest. People with a disability want to be considered full-fledged citizens and Nema is, together with other associations, the advocate for their rights. Nema provides their members with information, peer support and education. To fulfill these goals Nema sets up a broad variety of activities. Nema works closely together with neuromuscular reference centers (expert centers, mostly university hospitals) to update medical information. What are our goals? Nema brings people with neuromuscular disorders together to improve their quality of life as well as that of their families. Nema fights for the rights of its members, provides information, peer contact and education. The goal is to implement full participation in every aspect of the community. The idea of inclusion is primordial: every threshold that leads to exclusion must be cleared away. Nema is a partner of the society in improving accessibility for people with a physical handicap not only on the street, in public transport and buildings, but also in every social area and for each individual. Nema wants to enhance awareness of neuromuscular disorders and support the idea that everybody belongs to modern society. Nema promotes scientific research and its ultimate goal is to achieve treatments and a cure for every neuromuscular disorder. What are the core activities of our association and of the ataxia group? Because Nema aims at a broad inclusion of people with a neuromuscular disorder, it targets a wide variety of social echelons and professional groups. Our ultimate goal is to help to include people with a neuromuscular disorder in education and training, leisure time, local, provincial and national government and their administrations etc. Nema: Keeps special interest in and cooperation with the NMRC’s (neuromuscular reference centers) and MPI’s (medical pedagogic institutes) where people with a neuromuscular disorder are admitted for diagnosis, treatment and support. Organizes support, education and information for its members via peer contacts and regional symposia concerning coping with a disorder, nutrition, education, adapted housing, holiday trips etc. Organizes a wide variety of activities for the members: weekends for parents, excursions to cultural or recreational facilities, regional informal meetings etc. Publishes a magazine (NM) four times a year and provides it to the members. Edits brochures (for instance the brochure about Friedreich’s ataxia), has its own website and forum, there is communication with the members via social media such as facebook. Defends the interest of persons with a neuromuscular disorder at different agencies and is acknowledged by the government and invited as a partner. Is represented in a variety of organizations with common areas of interest: VPP (“Vlaams Patiëntenplatform” = Flemish patient platform), “Gelijke rechten voor iedere person met een handicap” (GRIP = equal rights for every person with a handicap), “RadiOrg” (Rare Diseases Organisation)… Keeps in touch with the latest evolutions in scientific research and stimulates scientific studies. Assists members in their request for a personal assistance budget (PAB). The ataxia group: The members of the diagnostic group get access to all the publications and are invited to all activities of Nema. Peer contacts take place two times a year (one in spring, one in autumn) on different locations. There is a round table discussion where personal experiences are shared and discussed. Occasionally a speaker is invited to talk about a topic specifically related to ataxia. Since 2015, the ataxia group has also held an informal reunion with a barbecue in a recreational area in summer.