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

At this time about 60 to 70 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, Brasil 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.