In September 2022, we held our charity event for the Link to Hope charity. Link to Hope offers help to people of all backgrounds regardless of race, colour or creed with no qualifying criteria other than that they are poor and marginalised. Their mission to alleviate poverty and deliver humanitarian aid through education and social care projects aligns with our core FIECON values.
We filled and wrapped sixty two shoe boxes with essential items for families and older people to be sent to people in Ukraine for Christmas.
Through our work at FIECON, we help to launch treatments for rare and often debilitating diseases. We invited Dravet Syndrome UK Chair of Trustees, Galia Wilson, to talk to us about her first hand experience of how patients and their families live with the complex and devastating rare disease; Dravet Syndrome.
Living with a child or adult who has Dravet Syndrome can be a very difficult and potentially isolating experience for families. As well as experiencing severe, difficult-to-control seizures, children and adults with Dravet Syndrome have varying degrees of intellectual disability and a spectrum of associated conditions which may include autism, ADHD, behaviours that challenge and difficulties with speech, mobility, eating and sleep.
An understanding of the patient perspective highlighted the benefits that FIECON deliver and help to improve lives.
