Book Now: MDI FSHD Community Gathering – Online | Saturday 11 October
We are delighted to invite you to our FSHD community gathering on Saturday 11 October. Please note this event will now take place online only. It will be opportunity for people living with FSHD and their families to connect as a community and learn together. We have lined up an exciting programme of speakers and topics that we hope you will find informative and empowering.
MDI are delighted to share the presentations and speakers from the recent FSHD Connect Europe
This event that marked a significant milestone for the European FSHD community. The meeting brought together 200 participants, patients, family members and caregivers, from 25 countries across Europe and beyond.
Spotlight on members of our community living with neuromuscular conditions: Eoghan Curry
I lost the use of my right shoulder when I was 19. Then, when I was in my late twenties in 2009, I had issues with my left shoulder. I went to a shoulder specialist who referred me to a neurologist who ran all the tests. He brought me to the muscular dystrophy clinic in Beaumont in 2010 where I received a diagnosis there and then. Then I had more tests and received a genetic diagnosis in 2013. Facioscapulohumeral muscular dystrophy type 2 accounts for approximately 5 per cent of all cases of FSHD.
Round Up On Research Developments By Condition
Neuromuscular conditions can be difficult to diagnose and manage, so research is vital for families and for quality of life. In this issue, we include a round-up of some research developments that have taken place in recent months