FOSMN (Facial Onset Sensory and Motor Neuronopathy) is an extremely rare progressive and devastating neurodegenerative disease, having a huge impact on patients and their loved ones. It weakens the muscles from the face down to the neck, shoulders and possibly the arms, hands, chest and legs, causing difficulty with speech, eating and swallowing, keeping the head upright, weakness or loss of strength in the upper limbs and breathing. Development of the illness differs from person to person.

At this time about 100 patients are described in medical literature worldwide, but it is suspected more suffer from FOSMN due to misdiagnosis and unfamiliarity with the disease.

About this site is dedicated to gathering patients, researchers, medical professionals and sharing patients’ experiences and information, and supporting initial research into FOSMN.

This site is created by a small number of FOSMN patients. Currently we are in contact with patients from The Netherlands, Norway, Germany, Spain, Portugal, South Africa, New Zealand, Canada, the UK, Australia, Brazil, Poland and the US. We greatly welcome anyone else suffering from or otherwise taking an interest in FOSMN.

Some of us have been involved in a research project carried out early 2018 by the University Medical Center Utrecht, The Netherlands, which aims at further understanding the causes and characteristics of this disease.

Please visit and follow our Facebook page for the latest developments.