Helen Syms
Trustee
Helen came to The Marfan Trust through the experience of her son. His was a first occurrence of the condition in the family, diagnosed age eight, and an acute presentation in the primary symptom areas of cardiac, skeletal and ocular issues. Management of the condition involved regular hospital appointments in each of the specialist areas and a necessity to be familiar and fluent in describing and discussing the condition with medical and educational professionals and others. Her son passed away in 2017 age seventeen after complications from scheduled cardiac surgery, and this whole experience has strengthened Helen’s support for the Marfan cause.
An active fundraiser over the years, Helen has completed various running and cycling events, a sky dive and a wing walk to raise funds for charities including The Marfan Trust, Scoliosis Association UK, VICTA Children, and Child Autism UK. Through this charity trustee role she looks forward to supporting and building the Marfan Trust benefits for members and the wider public.
Helen has a business background in the energy sector and a career in commercial finance and business development roles with coaching and learning as a later focus. She has held previous volunteer roles as a charity trustee and in school governance.