“It’s been a privilege to serve as an SHA Trustee”

Dina De Sousa has stepped down as a Trustee after serving for five years on our Board.

Dina (59), who inherited the faulty gene that causes the disease from her late father, is moving soon to Portugal, where she and her husband Paul both have family roots. She recently had surgery for breast cancer, which was detected during a routine check shortly after her decision to step back from the Board.

Following treatment, Dina intends to continue her involvement with the Huntington’s community by volunteering with the Portuguese organisation, serving on the European Huntington Association Board, and as a member of the Executive Committee with the European Huntington’s Disease Network (EHDN).

“Scottish Huntington’s Association is one of the strongest in the world and it’s been a privilege to serve as a Trustee,” said Dina.

“I’ve learned a lot from how the charity is run and the quality of access to services it provides for families, including the work of HD Specialists, the Financial Wellbeing Service and the Youth Service, and the development of the National Care Framework for Huntington’s Disease. ”

Dina first contacted us ten years ago while taking part in a fundraising trek in Peru, and became increasingly active locally, nationally and internationally.

As Chair of the Lothian Family Branch from 2015 to 2022, she brought together families to support and learn from one another, enjoy activities and social events, and fundraise. She also sat on our Welfare Grants Committee to provide emergency financial support for families, and our Short Breaks Committee to enable families to enjoy time away together or for much-needed respite.

A keen advocate of research, Dina has participated in the Predict and HD Clarity studies and sat on the influential EHDN Scientific and Bioethics Advisory Committee until 2022. Her global network includes key decision makers, scientists, campaigners, clinicians and family members and she has taken part in international conferences in Poland, Brazil, Italy and, most recently, the HDYO Congress in Glasgow.

“Dina has made an incredible contribution to our work and to the lives of Huntington’s families in Scotland and far beyond,” said Chief Executive Alistair Haw.

“We have benefited greatly from her expertise, friendship and the gentle yet determined approach she takes in all that she does for our community. We wish her the very best with her treatment and will, of course, be staying in touch. Dina means so much to the SHA family and will always be made enormously welcome at any of our events and get togethers whenever she is able to attend.”

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