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Cambridge-based AKU Society in BBC Radio 4 fundraising appeal

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Cambridge-based charity the AKU Society will broadcast a nationwide appeal on BBC Radio 4 on 2 May to raise funds for children with the ultra rare disease Alkaptonuria (AKU). ‘’ “”

The AKU Society with Dr Nick Sireau, centre
The AKU Society with Dr Nick Sireau, centre

Also known as Black Bone Disease, AKU turns patients’ bones and cartilage black, causing severe disability as life progresses. This is due to a missing enzyme that causes the body to accumulate a substance called homogentisic acid at 2,000 times the normal rate. The build-up of this acid leads to a variety of life-changing disabilities. Patients develop early onset osteoarthritis, which can destroy every joint in the body. One patient said “it feels as if your bones are wrapped in barbed wire”. The immobilising nature of the disease can lead to social isolation, unemployment, and chronic pain. Heart disease can also form because of the hardening of tissue in the heart valves.

The money raised through the appeal will fund a vital study to understand at what age AKU starts to attack the bones of children, potentially leading to a life-changing treatment becoming available to them before the damage begins.

Dr Nick Sireau, CEO and chair of the AKU Society, which was founded in 2003, said: “Knowing when the disease starts to attack peoples’ bones is vital. Armed with this knowledge, we could begin giving children nitisinone early enough for them to grow up without any of the symptoms of this devastating disease.

“The Radio 4 appeal is a brilliant way of raising money for our work, while increasing people’s knowledge of the disease and the work we do. Please listen to the appeal and donate through the BBC website.”

Brighton-based mum of two Jess Barnes, 46, will voice the appeal after her son Daniel, 10, was born with the disease.

AKU Society volunteers fundraising
AKU Society volunteers fundraising

Jess said: “To hear that your child has a very rare disease that, if left untreated, will lead to a lifetime of pain is absolutely heart-breaking. This was the position we found ourselves in when our son was first diagnosed. There is no cure but there is now hope thanks to the AKU Society.

“A drug is available that could stop the disease in its tracks and that is why the BBC Radio 4 appeal is so important to me as we need more funding. I don’t want time to run out for my son and for other children like him.”

The appeal will be broadcast on BBC Radio 4 on Sunday, May 2 at 7.54am and 9.25pm, and will be repeated on Thursday, May 6 at 3.27pm. You can either listen on your radio or via the BBC Sounds app or website.

The AKU Society provides patients with personalised care and home visits, along with the latest information from specialist workshops, a new website, social media and online patient communities. The goal is a future where no-one born with AKU anywhere in the world has the symptoms of this disease. Through patient support, community building and medical research, the AKU Society aims to transform the lives of AKU patients.

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