PROFILE

Swiss French and Italian-speaking Muscular Dystrophy patient organisation (ASRIM)

In 1977 a small advertisement appeared in a Swiss food cooperative journal: “Muscular dystrophy patient seeks muscular dystrophy patient”. The ad was placed by André Torchio, a 58-year old muscular dystrophy patient. Five people responded to the ad and on 4 December 1977 the Swiss French-speaking Muscular Dystrophy organisation (ASRM) was formed in Lausanne. “The immediate main aim was to create awareness of muscular dystrophy as the general public confused it with short-sightedness!” [a similar-sounding word in French¹]. “In those days a medical student’s training included just half an hour’s study of muscular dystrophy” recounts Francine Ludinard, who in September 2006 became the organisation’s general secretary.

The plight of rare disease patients in 1977 was extreme; in Switzerland as elsewhere. “A patient was diagnosed with muscular dystrophy and there was nothing for him or her, not even physiotherapy” explains Francine Ludinard. As well as this total isolation of the patient, there was a severe lack of financial support and shortage of information about the diseases. A Swiss muscular dystrophy patient organisation already existed: the Schweizerische Gesellschaft für Muskelkranke (SGMK), founded in 1975. For language reasons (Switzerland has 4 national languages) this organisation served the German-speaking muscular dystrophy patient community only. In 1985 ASRM and SGMK joined forces to create the Swiss Foundation for Research on Muscular diseases (FSRMM). “The aim of the foundation is to fund neuromuscular research programmes. The foundation is currently financed by private donation” reports Francine Ludinard.

In 1988, FSRMM and ASRM decided to organise a fund-raising event with the French Muscular Dystrophy organisation, AFM, (which had organised the first French Telethon a year earlier). They raised 250,000 Swiss francs (152,000€). The Telethon is the principal source of funding for FSRMM and ASRM. “In 1995 we decided to create the Swiss Telethon Action Foundation (FTAS) with a three-fold objective: to fund research, to finance social assistance and to inform on a wide scale. The FTAS also ensures complete transparency: FTAS gathers the funds and ASRM distributes the financial aid to patients” Francine Ludinard points out.

30 years after its creation and following a name-change to ASRIM (having incorporated Swiss Italian-speaking patients in March 2000), the organisation’s aims are still centred on muscular dystrophy, specifically:
  to create a register of muscular dystrophy patients;
  to encourage treatment and adaptations for social and professional integration of patients;
  to raise awareness and inform public opinion and authorities through conferences, radio broadcasts, newspaper articles and distribution of written material etc;
  to support medical research;
  to provide help and support to people living with muscular dystrophy and to their families (advice, support, information, contacts, recommendations, financial aid etc.);
  to combat muscular dystrophy generally;
  to organise information days for members, doctors, medical and paramedical personnel;
  to develop holiday camps for adults and children.

Several ambitious projects are currently driving the organisation: the development of medical centres and multidisciplinary hospitals throughout Switzerland, as well as the Joysteer project: “It is an auxiliary steering device which enables a conventional vehicle to be driven using a joystick” explains Francine Ludinard. But first, the organisation has its 30 year anniversary to celebrate in December. “We have invited our members and contacts - largely family members - to a celebratory meal followed by a 30-year retrospective and a show” reveals Francine Ludinard. The occasion to look back over a 3 decade-old battle of courage...

Author: Nathacha Appanah
Translator: Helen Lea
Photo credits: ASRIM © ASRIM; Telethon © Telethon; Jacob © Upham/Eurordis