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
FOSMN.org 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.
Being mobile. It seems so common, but is not self-evident to everyone. Around 600 muscle diseases make exercise difficult to impossible. The Wervershoofse Sandra Botman, herself affected by a muscle disease, starts an action for the Prinses Beatrix Spierfonds. Hand in your old mobile phones at various sports and wellness centers in The Netherlands and help out.
Old mobile phones are worth money. In the month of May you can deposit them in the boxes in Sports and Wellness Center De Dars in Wervershoof, Sports and Wellness Center De Bloesem in Wognum and the seven branches of Fitnessclub Nederland. The proceeds go to the Prinses Beatrix Spierfonds.
In motion for the muscle fund
Sandra Botman (49) is HR employee at De Dars in Wervershoof, De Bloesem in Wognum and the seven branches of Fitnessclub Nederland. Sports centers where people train their muscles daily. How ironic that she got the diagnosis FOSMN at the end of last year. A rare muscle disease that slowly breaks down the muscles in the face and upper body, causing premature death. As with almost all muscle diseases, there is no medication. The Princess Beatrix Spierfonds and the UMC Utrecht are doing research to cure muscle diseases in the future. That requires a lot of money.
Collect cell phones
Instead of getting down to it, Sandra comes into action.
“As long as my head is still working, I keep moving. Even if that would not go physically anymore. The link between muscle diseases and the sports centers was soon established. I wanted to do something with that. My employers Ton Schouten, Inge Schouten and Judith Vijfwinkel were immediately ahead. We can use the 9 branches to collect a lot of mobile phones. The promotion is valid throughout the month of May. ”
What can you do?
Collect all old cell phones and deposit them in the appropriate boxes. Recognizable by the logo of the Prinses Beatrix Spierfonds. Broken or whole, new or old, every type of mobile is welcome. Various parts are reused in new products. This way you contribute to a second life for these parts and for muscles.
In the whole month of May the boxes are to be found in Sports and Wellness Center De Dars in Wervershoof, Sports and Wellness Center De Bloesem in Wognum and at Fitnessclub Nederland in Schagen, Deurne, Vaartbroek (Eindhoven), Zaltbommel, Helmond, Tiel and Vught.