Policy and campaigning

Minister's open letter to SEND children and their parents/carers and families

15th January 2021

The Parliamentary Under Secretary of State for Children and Families, Vicky Ford MP, has written an open letter to all children and young people with special educational needs and disabilities, their parents/carers and families, and others who support them. Find a copy of it here.

In the letter the Minister confirms that children with an Education, Health and Care (EHC) plan should be able to continue attending school if they want to, and if they can't, they should receive remote education and support. The Minister also states that the Government does not intend on suspending the legal duty to provide for a EHC plan - as happened in 2020 - during this lockdown.

This is welcome news, and Duchenne UK called on the Government to reinstate the legal provisions in EHC plans in our evidence to the Education Select Committee last year.

In a recent webinar, Decipha's Dr Janet Hoskin spoke about education and homeschooling during this lockdown. Watch it below:


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 15 January 2021

Share this article