Polish Association for Families with Spinocerebellar Ataxia (Forum Ataksja)
In 2004, patients with ataxia in Poland and physicians at the Institute of Psychiatry and Neurology in Warsaw decided to set up an Association of people suffering from this incurable disease. We have united because the disease is rare and in 2004 very few doctors heard about it. Currently our Association includes people who are sick, their families and relatives. This is related to our name - POLISH ASSOCIATION FOR FAMILIES WITH SPINOCEREBELLAR ATAXIA.
The Association in cooperation with genetics and neurologists from the Institute of Psychiatry and Neurology in Warsaw has been supporting people with spinocerebellar ataxia, among others by organizing rehabilitation camps, conferences, meetings.
Since 2004, national meetings were organized, where patients could meet with specialists and hear lectures about the disease itself. In January 2005, we registered the Association in the National Court Register, thus we gained legal personality. From that moment, as “non-profit” organization we could collect 1% of the annual income tax and could provide in full to help people and their families mainly through rehabilitation organizations that we finance (in whole or in part ) from funds obtained. Since 2007, the Association has also started to organize practical meetings, where patients exchange their own experiences and have the opportunity to use the practical knowledge of specialists. In addition the Assotiation provides knowledge about the disease throughout Poland. In 2006, the Association's website was launched. Information about the disease, possible methods of its slowdown, contacts to specialists was collected on it. Important information arrives successively. In 2007, an online forum was launched to allow patients to contact each other and exchange information and experiences. Currently, it is one of the main ways of communication of patients and the largest, collected in one place, knowledge about the disease itself.
The doctors of the Institute of Psychiatry and Neurology in Warsaw are the members of Consortium Ataxia Study Group and it was opportunity for our ataxias patients to participate in the research grants EUROSCA and RISCA.
Our Association actively had taken part in the “Social Innovations” grant co-financed by National Centre for Research and Development Clinical TeleNeuroforma - clinically verified home rehabilitation system for people suffering from selected neurological conditions in 2015 – 2017. The Neuroforma is an innovative computer program employs virtual reality elements, designed for ataxia patients to improve motor and cognitive functions.
In the future, the Association wants to extend its activities to include contact with the international community of patients with ataxia and with other organizations. We believes that this international contact will help us to have access to the latest scientific reports and news. We would like to provide the most up to date information to our sick members about the disease, the possibility of treatment and about new clinical trials.