Rare Condition Letter

A LEIGH teenager hand-delivered an open letter to Downing Street in a campaign to secure NHS treatment for her rare genetic condition.

Brogan Johnson, 17, was joined by her mother Karly Johnson, as she took the letter to Number 10 as part of a petition to secure funding for a drug able to treat Friedreich’s ataxia (FA).

The inherited neurodegenerative disorder causes progressive damage to the nervous system, affecting movement, speech and the heart.

The letter to Downing Street urges the NHS to fund the drug omaveloxolone, after it was approved for use in Ireland.

This follows a successful campaign which gathered more than 100,000 signatures in support of NHS funding for the treatment.

This was an important milestone, as it meant that the petition could be considered for debate in Parliament,

Brogan said: “I would really love Andy Burnham to see first-hand what living with Friedreich’s ataxia is actually like for me.

“I want him to see the impact this disease has had on my life and understand why access to treatment means so much to me and to other young people living with FA.

“I’m hoping that taking the open letter to Downing Street will help make sure our voices are heard.

“I just want the chance to have a future.”

Brogan was diagnosed with the condition in 2024 and has already lost 80 per cent of her mobility.

Her mother Karly said: “Taking Brogan’s open letter to 10 Downing Street is one of the most important things I have ever done as her mum.

“I’m not going there just as a campaigner, I’m going there as a mum who is watching her daughter live with a devastating, life-limiting disease while knowing there is a licensed treatment that could potentially help her, yet she cannot access it through the NHS.

“We have fought tirelessly to make sure Brogan’s voice, and the voices of families across the UK living with Friedreich’s ataxia, are heard.

“Today is about asking the Government to listen, to act and to give these young people a chance.

“We are not asking for special treatment, we are asking for a fair chance at treatment.”

The campaign was supported by Southend West and Leigh MP David Burton-Sampson, who helped arrange the meeting at Number 10.

Mr Burton-Sampson said: “It was an honour and a privilege to help get Brogan’s letter to Number 10.

“Thank you to everyone who has supported them in our corner of Essex, and to everyone who came together from across the country today.

“I will continue my work with ministers, Biogen and NICE so that we can get real and meaningful progress as soon as possible for Brogan and all those affected by Friedrich’s Ataxia.”

Picture: by Karly Johnson: Campaigners gather in Parliament Square on the day

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