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Father's £300k Race for Son's Life-Saving Drug
3 Mar
Summary
- Jake McGregor-How, 16, diagnosed with rare Friedreich's Ataxia.
- Treatment omaveloxolone unavailable on UK's NHS.
- Family seeks £300,000 for German treatment.
Jake McGregor-How, a 16-year-old from Liverpool, has been diagnosed with Friedreich's Ataxia (FRDA), a rare genetic disorder that progressively damages the nervous system.
His father, Paul, is urgently fundraising for a year of treatment with omaveloxolone in Germany, as the drug is unavailable on the UK's National Health Service. The family aims to raise £300,000 for this treatment.
Omaveloxolone has been shown to slow FRDA progression, but the National Institute for Health and Care Excellence (NICE) has not recommended it for NHS use because the manufacturer withdrew its evidence submission.
Jake's diagnosis came three years after the tragic death of his mother from brain cancer in 2023. The family is now awaiting eligibility confirmation from a German clinic.
The drug is crucial for slowing Jake's condition, which has worsened since last summer, affecting his balance and mobility. Without treatment, the disease can lead to wheelchair dependency within years and heart problems.
Jake's father is campaigning for the UK government to reconsider access to omaveloxolone, highlighting the devastating impact of the treatment's unavailability. His local MP is supporting the effort to urge the drug manufacturer to re-submit for appraisal.
