Patient care & support

Duchenne UK continues to offer free educational support for children and young adults with DMD through Decipha

19th August 2020

Duchenne UK has one clear aim – to End Duchenne. Whilst we continue to work hard to accelerate research, we also provide much needed support to families within the DMD community.

Education is an area that many families need support in, which is why we have spent £110,000 over the last three years funding Decipha. Decipha was set up by parents of a boy with DMD, and provides FREE special educational needs support and advice on starting and developing a personal Education Health and Care Plan (EHC Plans) for young people with DMD.

Through Decipha, Duchenne UK has:

  • Funded 169 families to receive Decipha’s (since 2017)
  • Provided 16 families with one-to-one consultations at Duchenne UK’s Patient Information Day
  • Given out more than 200 FREE copies of Janet Hoskin’s book about supporting children and young people with DMD with their education and transition into adulthood

Decipha is there to support families to make sure the correct Plan is put in place, they support families all the way through to mediation, if needed, to ensure that the complexities of Duchenne are taken in to consideration throughout the child’s education. Through their “RoadMap for Life” programme, they have been working with many families who need support for Special Educational Needs assessments and advising families through the process of writing and getting EHC Plans in place.


Decipha’s continued support during COVID-19: 

Decipha has continued to help support young people with DMD with their education needs during the COVID-19 pandemic through video or phone consultations with families and schools.

Decipha has been working with many families and their schools to ensure support through EHC Plans is maintained, especially for agreed interventions for Reading, Literacy and Maths.

The closure of schools during the COVID-19 lockdown has had major and sometimes devastating impacts on families. In April, the Government made temporary changes to regulations for EHC Plans and SEND provision. The changes mean it is very important to make sure that the process of drafting and revising EHC Plans for young people with DMD continues, despite the temporary Government changes to usual timescales for putting the plans in place. Decipha can support you with this.

Last month, Nick and Janet joined Duchenne UK for a webinar to support families during the COVID-19 pandemic with advice on education, home schooling and preparing for return to school. You can watch it here: https://www.duchenneuk.org/news/webinar-with-decipha

Join our next Decipha webinar:  We will be hosting another webinar with Nick and Janet on Tuesday 25th August at 7pm, we will be discussing how to prepare for going back to school.

Register here: https://us02web.zoom.us/webinar/register/WN_xE0vfij5QWO0i5dXI7VqAw


Please get in touch if you need Decipha's help: 

If you need to get started, review a plan or need specialist educational assessments then please get in touch with Decipha by emailing: [email protected] or visit www.decipha.org.



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 19 August 2020

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