We are happy to announce that we have begun to collaborate with the Fundación Almar, a non-profit organization that aims to become a reference for Friedreich ataxia and other degenerative ataxias, where patients and families could find information, guidance, training, social and health care and the mechanisms, instruments and means necessary to combat this disease, defending the rights of those affected.
What is Ataxia?
It is an inherited disease with an autosomal recessive inheritance pattern that affects men and women equally. Ataxia is a devastating neurodegenerative disease that causes, in sufferers, a progressive deterioration of the cerebellum and dorsal spinal ganglia.
It causes in those affected a progressive loss of functions necessary for personal autonomy such as loss of sensitivity, lack of coordination in movements, scoliosis, dysphagia, dysarthria and sometimes diabetes, vision deficits and cardiovascular problems.
This is the reason why, between 10 and 20 years after the first symptoms appear, the person is confined to a wheelchair and, in later stages of the disease, becomes totally incapacitated.
Due to its low incidence, it is included in the group of rare or minority diseases, also known as rare diseases, which are characterised by a very low level of resources for research and patient support on the part of the Institutions. There are currently some 3,500 people suffering from this disease in Spain.
What the Foundation does?
It dedicates efforts and resources to:
- To improve the quality of life of patients suffering from Friedreich’s ataxia and their families by providing them with specialized medical, psychological and social coverage.
- Integrate/include those affected in society, at school, sports, social and work levels, by creating jobs for people with disabilities.
- To support, encourage and finance research projects, disseminating their progress and results.
What countries does it work in?
- It carries out its activities in Spain.