April 2017

Duchenne UK is pleased to announce that it’s joining forces with Decipha CIC, an organisation dedicated to providing specialist advice and support to young people and their families with complex education and medical Special Educational Needs. Decipha has worked with many families and schools about the learning and behaviour needs associated with having DMD.

Children with DMD have a high risk of specific learning and behaviour problems, that if not identified, can lead to young people falling behind their peers at school and in some cases cause social, emotional and communication problems.

Decipha has successfully developed the RoadMap for Life Programme that can help to identify key outcomes required for Education Health and Care Plans for young people living with DMD.

With the funding from Duchenne UK, Decipha will work face to face with families and offer a range of assessments and valuable support. This might involve training at school or some advice or support over the phone, or a full assessment followed up by detailed reports and recommendations towards Education Health and Care Plans. This is a FREE service to DMD families.

Decipha was set up by Nick Catlin and Janet Hoskin whose son Saul, has DMD.

Nick Catlin, Director and SEN Advisor at Decipha, said:

"We know from research that there is a high risk of boys with Duchenne having specific learning and behaviour problems. The good news is that boys can improve these lagging skills with the right support and intervention.  We are delighted to work with Duchenne UK to be able to offer an range of options through our RoadMap for Life programme that will help to identify positive outcomes for young people living with Duchenne."

Emily Crossley & Alex Johnson, co-founders of Duchenne UK said:

“Duchenne UK’s primary focus is on funding research. But we are acutely aware of the daily struggles faced by families as they try to navigate schooling and get the best support and care for their sons. We are pleased to be supporting Decipha and that our funding will allow families to access this expertise and advice at no cost to them.”

If you are a family and would like to find out more and Register for the Decipha RoadMap for Life Programme then please visit http://decipha.org/roadmapforlife

NOTES FOR EDITORS

For more information, please visit our website at www.duchenneuk.org, for interview requests please contact Molly at [email protected]

What is Duchenne Muscular Dystrophy?

Duchenne Muscular Dystrophy 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 is a lean, ambitious, and highly focused charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy. The charity has been formed by the coming together of Joining Jack and Duchenne Children's Trust, the two biggest funders of research in the UK in the last three years. Its president is HRH The Duchess of Cornwall. Its patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell.