Support of families with SMA

Since 2007 we provide universal support and help to families with spinal muscular atrophy (SMA).

Our activity was requested by a long-term demand of specialists and parents of children with this disease. This disease is relatively rare, difficult to diagnose and up till today a registry of the mentioned disease does not exist. The impulse for origin of the Support of Families with SMA project came from a family, who themselves take care of a child with this disease.

Each year we organize two psycho-rehabilitative weekends for families from the whole of Czech Republic, where the most burning issues are discussed, which the families with a child with such disease need to solve every day, most often issues such as the influence of disease on the functioning of the family, marriage crisis as a result of the health disability of the family member. We consider the psychotherapeutic work with children with the disease and their healthy siblings as much needed one. Social counselling in the field of care allowance, compensatory aids and getting grants to finance these aids is the next desired service. An integral part during meetings, where adults have a joint program, is babysitting service. Apart from the weekend family activities we also provide rent of compensatory aids, managing a SMA web forum and mediation of information on the newest forms of treatment and compensatory aids.

Team of specialist doctors and specialists – consultants is also available for cooperation in the area of particular questions, keeping up to the right therapeutic steps and care for patients.

Dr. Miluše Havlová, M.D. – 1st Medicine Faculty, Charles University, Prague, Neuromuscular clinic

Jana Haberlová, M.D. – Motol University Hospital, Paediatric Neurology

Dana Šišková, M.D. – Thomayer University Hospital Prague, Paediatric Neurology

Assoc. prof. Petr Vondráček, M.D., Ph.D. – Brno University Hospital, Paediatric Neurology

Assoc. prof. Taťána Maříková, M.D. - Motol University Hospital, Clinical Genetics

Petr Krawczyk, M.D. – Technical Orthopaedics Ostrava

Assoc. prof. Martin Repko, M.D. – Chief physician of Orthopaedic Clinic, Brno University Hospital

Assoc. prof. Vanda Hájková, Ph.D. – special education teacher at Charles University, Faculty of Pedagogic, SOMSPOL association

Blanka Bartošová, M.A. – Special Education Centre for integration and inclusion of SMA patients into the society

Daniela Jeníčková – Social worker from the Special Education Centre Prague

Some of the mentioned specialists participate in our weekend gatherings.