Policy and campaigning

Duchenne UK supports call for Life Sciences-Charity Partnership Fund

As the year progresses, the devastating impact of COVID-19 on charities like ours is becoming clearer. 

The loss of income is astonishing - with fundraisers cancelled and charity shops closed due to COVID-19, the third sector is facing around £12.4bn less funding. 

While the Government has promised £750m to keep some frontline charitable services running, there is no support for medical research charities like Duchenne UK.

The medical research charity sector faces an average 41% reduction in research spend over the next year, a shortfall of hundreds of millions of pounds. In response our industry body, the Association of Medical Research Charities (AMRC), is pushing the Government for a Life Sciences-Charity Partnership Fund. The Fund would be a co-investment scheme worth £310m over three years, which charities would match. 

Thanks to the amazing contributions of our supporters we have been able to maintain all our research commitments, but not every organisation has been so fortunate. 

Duchenne UK is supporting the call for the Life Sciences-Charity Partnership Fund in order to protect the scientists, innovative trials, and ground-breaking research which contribute so much to British society and our economy.

By chance the Treasury is currently holding a Comprehensive Spending Review, setting Government budgets and spending plans for years to come. 

We were delighted to see the AMRC cite the work of our Clinical Trial Finder and the DMD Hub as an example of cutting-edge digital infrastructure in their submission making the case for the Life Science-Charity Partnership Fund to the Treasury.


What is Duchenne Muscular Dystrophy?

Duchenne muscular dystrophy (DMD) is the most common fatal genetic disease diagnosed in childhood. Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and early death, often in their 20s. It almost exclusively affects boys. There is no treatment or cure. In the UK there are around 2,500 boys affected and around 300, 000 worldwide. It is classified as a rare disease.

Who are Duchenne UK?

Duchenne UK has one clear aim – to end Duchenne, a devastating muscle-wasting disease. As the leading Duchenne charity in the UK, we connect the best researchers with industry, the NHS and families to challenge every stage of drug development to make the incurable, curable. Together, we will find treatments and cures for this generation of patients with Duchenne.

Our president is HRH The Duchess of Cornwall. Our patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell. 

We need your help, because we need to keep funding promising new research.

How to donate?

Duchenne UK is entirely reliant on donations to fund research for treatments and a cure to DMD. This can be done via:

  • Direct Debit – Duchenne Direct
  • Individual Donation – Donate
  • If you are a family or friend affected by DMD you can set up your own fund with Duchenne UK – Family and Friend Funds
  • Take part in one of our fundraising events – Events
  • Text DUCHENNE to 70085 to donate £5. This costs £5 plus a std rate msg.

For more information visit www.duchenneuk.org

Published on 30 September 2020

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