History and background of Freddie’s Ataxia Fund.

The charity was formed by friends and family of Eilidh Beth Kiddie, who lives with Friedreich’s Ataxia (FA). Eilidh was diagnosed with FA in 2019 aged 10 years old.

Friedreich’s Ataxia is a very rare inherited progressive neuro-degenerative disease. Most people receive their diagnosis in childhood but for some it can be late teenage years or into adulthood. It effects approx. 1:50000 people. FA affects the balance, coordination, mobility, fine motor skills, and fatigue amongst other things.

In February 2023 the FDA approved Omaveloxolone (Skyclarys) as the first and only treatment for FA for use in the US

I The drug has been shown to improve symptoms and reduce the rate of progression in adults (over 16 years old) with FA. On 12th February 2024 the European Commission approved Skyclarys for the treatment of people with FA aged 16 and over in the EU. Those with FA in the UK wait for approval and access to this medication with a recent date of late 2025 being given.

In 2019 the charity Ataxia UK undertook a project exploring the financial inclusion related experiences of people with ataxia. Researching the financial circumstances of Ataxia UK Friends - Ataxia UK . It highlights perspectives of people with ataxia on their financial situation and the extra costs they face associated with ataxic conditions.

Most people with FA will use walking aids and wheelchairs to mobilise. Maintaining the ability to walk helps with general wellbeing, muscle power, spinal and bone health, gut health and mental health. Regular Physiotherapy, exercise sessions, equipment and support are essential help those with FA to remain active, upright and independent.