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.

On 23rd April 2025 the MHRA approved first UK treatment for Friedreich’s Ataxia, Omaveloxolone.

The UK has waited over 2 years for the approval of the first and only treatment for FA Omaveloxolone (Skyclarys). It first gained FDA approval in the USA in February 2023. 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.

On April 24th 2025 Ataxia UK emailed an update on NICE approval:

‘As we have reported in the past, Omaveloxolone was under evaluation by NICE, the body that oversees reimbursement of medicines in England and Wales. Unfortunately, we have been told that Biogen has taken the decision to withdraw from this evaluation following discussions with NICE. During their discussions NICE had indicated to Biogen that they would not proceed to committee stage when the patient and clinical community would have had the opportunity to highlight the unmet need in FA and the potential of the treatment. Read the statement from Biogen to Ataxia UK here. Although this is really disappointing news, Biogen are committed to identify a solution that enables broad access to Omaveloxolone across the UK funded by the NHS.

In Scotland the Scottish Medicine Consortium (SMC) will decide whether it should be made available on the NHS in Scotland using a similar process to that of NICE. Wales and Northern Ireland can also adopt NICE recommendations.

As soon as we have more information on timelines, we will provide an update’

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.