Our Director of Fundraising and Communications, Dayna Ferdinandi, joined Ben Boulos from BBC Breakfast, to film a piece raising widespread awareness about dystonia.

Yesterday our Director of Fundraising and Communications, Dayna Ferdinandi, joined Ben Boulos from BBC Breakfast, to film a piece raising widespread awareness about dystonia and the challenges faced by those living with the condition, shedding light on the impact it has on individuals and their families.

The opportunity came about as Ben had mistakenly thought in an interview with specialist guest (Teresa) that she was shaking her head no to a comment when actually it was her tremor he was seeing. Teresa very calmly corrected him and the interview they were having about a different topic continued. A clip of the incident ended up on social media and generated over 2 million views! Having never heard of dystonia, Ben decided that there was not enough awareness about the condition and thought that BBC Breakfast could really help. He contacted Teresa and Dystonia UK to make it happen.

Ben has now spoken with:

• Teresa to discuss her personal experience;
• her clinician, Dr Amit Batla, to discuss the condition, its symptoms and complexities; and
• Dayna to discuss from the charity’s national perspective the lack of awareness of the condition and the impact it can have on people’s lives.

The piece, which is a blend of personal experience and expert insights, will be broadcast in the new year.

We are thrilled to have been part of this collaboration. The extensive reach of BBC Breakfast, as well as social media engagement and subsequent discussions will ensure that the message “Dystonia Matters!” reaches millions of people nationwide.

Published: 15th December 2023