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We are extremely sad to announce that SMA UK Trustee, Clare Gray passed away on Tuesday 3rd October following a short illness.

Clare joined the SMA UK Trustee Board in November 2020 and, as someone living with SMA type 2, she had first-hand experience of the societal barriers as a disabled person and was a key advocate for change.

In addition to her role as an SMA UK trustee board member, Clare was the Shaw Trust disability advocacy lead, was an active member on both the SMA Newborn Screening Committee and the SMA Europe Adult Committee.

Mark Dearlove, Chair of the Board of Trustees at SMA UK said, “Clare was an inspiration to all of us and our community. An effective disability rights champion whose powerful voice and determination made an impact on so many people. Echoing the words of my fellow trustees, Clare was cool, clever and strong. A wise and experienced head on young shoulders whose wisdom, humour, and strength we will all miss. She was a pleasure to work with. We will all miss her deeply.”

‘Clare was an extremely hard working and dedicated person who has inspired so many people living with SMA but also other disabled people, she will be greatly missed by all who knew and met her.’   SMA UK CEO, Giles Lomax