EHDN News

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EHDN2012: On the shoulders of giants

The 7th Plenary Meeting of the European Huntington’s Disease Network
(EHDN) took place in Stockholm, Sweden, from 14 to 16 September 2012,
in conjunction with the 15th European Huntington’s Disease Association
(EHA) meeting, and drew 657 delegates from Europe, the Americas and
beyond. The venue was Münchenbryggeriet, a former brewery on the
island of Södermalm, across the water from Stockholm’s City Hall. Anyone
wandering out for a blast of autumn sunshine could therefore gaze upon
the venue for the annual Nobel banquet before returning to the conference
hall freshly inspired.
Welcome
Sven Pålhagen (Stockholm) of the local organising committee opened the
meeting and introduced a man who clearly needs no introduction in Sweden.
David Lega (Gothenburg), one-time Paralympian, businessman and
politician, injected energy and optimism into the fledgeling plenary, as he
presented model number five of his own wheelchair design and adroitly
manipulated a bottle of water with his mouth (if he always had to carry
straws around with him, he said, he would be that little bit more disabled).
Lega, who was born with paralysed arms and limited use of his legs due to  a congenital condition called arthrogryposis multiplex congenita (AMC), talked about the importance of adapting to disability—choosing your battles, not being afraid to fail, and taking strength from a support network that continually boosts your self-esteem. He was lucky enough to have been born to young parents who hadn’t yet learned defeatism, he said, and he grew up surrounded by “happy eyes”.

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AICH ROMA ONLUS