June 2019

DUK’s investment in the groundbreaking work of the group Decipha has directly helped 117 families since 2017. People with DMD are at high risk of developing learning and behavioural difficulties. They face numerous medical, education and social care assessments. Decipha exists to navigate this complex arena providing a “RoadMap for Life” –helping families work with schools and educational facilities to develop the correct Education Health and Care Plan to unlock funding and support and to offer advise on mobility issues.

Decipha, is a non profit community interest company run by Nick Catlin and Janet Hoskin. It has received £80,000 from Duchenne UK so far and the charity is committed to continuing its partnership with the group -- to ensure that all families who need support can get it.

Nick Catlin, Special Needs Advisory Teacher and Director of Decipha, said:

“The start of your Education Health and Care (EHC) Plan at school is the chance for you to express your hopes, dreams and aspirations for your son living with Duchenne. It is so important to think about planning for the future by working with your son and school or college to identify the skills and qualifications he will need to succeed. If your son is falling behind his peers it is crucial to get an EHC Plan in place as soon as possible to get the support and interventions in place to help him catch up, gain confidence and build self-esteem.

The RoadMap for Life programme, funded by Duchenne UK, has been instrumental in supporting many families living with Duchenne Muscular Dystrophy to plan for a successful future”

Kate Tinkler's son Mitchell has Duchenne muscular dystrophy. She recently received support from Decipha, she said:

“It was invaluable to have the support of Nick and Decipha when we felt that it was time to begin the process of formalising Mitchell’s care in school and to initiate the application process for an EHC plan. Their expertise and knowledge of Duchenne helped guide discussions around educational and health care needs specific to Mitchell.

Having an external Duchenne- specific presence at the meeting really helped navigate this process and meant that our concerns were taken seriously, were supported and more likely to be understood and accepted”

You can read more about Kate’s experience with Decipha on our website: https://www.duchenneuk.org/decipha-patient-and-parent-stories

Charlotte Wakeling, mother of Felix, has also received support from Decipha. She said:

"My son Felix is starting school in September and like most parents, I’m feeling apprehensive, but with Duchenne there are even more worries to consider. I was in touch with Duchenne UK's cofounder Alex about my concerns, and she immediately put me in touch with Nick Catlin at Decipha. 

Contacting Nick was the best thing I could have done, what an inspirational man! Talking to him really alleviated my worries about Felix starting school and gave me practical advice about the EHC Plan process. Nick was not only able to give advice from a professional point of view, but as a parent too, which I think is so very valuable. Nick is very easy to talk to and has said to contact him at any time, if we need additional advice or even just a chat. This is good to know, and I will be most certainly using Decipha for Felix in the future. I highly recommend any DMD families to seek Nick and Decipha's free support"

To get in touch with Decipha visit www.decipha.org or email [email protected]

We have given out hundreds of FREE copies of Janet Hoskin book: ‘A Guide to Duchenne Muscular Dystrophy: Information and Advice for Teachers and Parents’ to the Duchenne community. This is a really useful resource which brings together chapters by a range of experts in DMD aimed at supporting young people and their families as they move through school and college. Families can email [email protected] to order a copy.

NOTES FOR EDITORS

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. 

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 and interview requests:

Visit www.duchenneuk.org

Molly Hunt – Head of Communications, Duchenne UK E: [email protected]