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In the beginning

The early beginnings

The seeds of the support group were established by Norman and Lorraine Jonas in the 1980’s after their eldest daughter Lisa was diagnosed with FSH-MD in her teens. With no other known members of either Lorraine’s or Norman’s families showing any signs or symptoms of FSH-MD, the diagnosis came as a big shock.

At the time of diagnosis, Lisa was finding it extremely difficult to lift her arms above her head; she was unable to close her eyes tightly or use her face muscles to smile.

…..”The only information handed to me at the time of diagnosis was a small article from a very old medical journal” Lorraine.

The group was setup with the aim to enable people with FSH-MD and their families to meet and share experiences, to find out more about research into this particular type of muscular dystrophy and to help people come to terms with FSH-MD once it has been diagnosed and also to publicize the group so that others with FSH-MD knew that they could contact us for support.

….”I wanted to find out more about this condition and help Lisa to meet other people with FSH-MD, I felt the best way to go about this was to start a support group”. Lorraine

With help from the then Muscular Dystrophy Group, the groups’ now popular FSH Muscular Dystrophy Twenty Questions Answered leaflet was published. This was followed by the publishing of the groups first newsletter in 1996 and the first conference in 1997 held in Leeds.

The group’s original website was built by Norman and continued to reach out to people all over the world who had FSH-MD for many years until 2009, when it was replaced by the one you see today.

In November 2008 the group signed a memorandum of understanding with the Muscular Dystrophy UK:

“We have a shared belief that we are stronger through working together” from memorandum of understanding.