Having a muscle disease like FSHD affects the way you walk, get dressed, work, how you sleep, where and how you live and the way that other people look at you and deal with you. Many people who have FSHD, are unable to smile, to raise a child, to fully close their eyes when they sleep, to walk on the beach, or up the stairs. Each day they are confronted with casual actions which they might not be able to perform the following day. Unfortunately, at the moment there is no cure for FSHD. Therefore, research is so important. The FSHD Foundation aims to raise funds for stimulating, facilitating and funding research into the causes and manifestations of FSHD, in order to discover therapies that can improve the quality of life of FSHD patients.
More information on the FSHD Foundation, its activities, or how to help the Foundation can be found at www.fshd.nl