Hear From Our Community

AD Champions take on London Landmarks Half Marathon

April 4, 2023 by Victoria Edwards

On Sunday 2nd April our seven AD Champions took to the streets of London to run the half marathon London Landmarks route. The weather was good - no …

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Lighter Days and Warmer Months

April 3, 2023 by Florence Boulton

Lighter Days and Warmer Months As we head into Spring, it is wonderful to begin to see the longer lighter days, the flowers beginning to bloom and …

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Continuing to come together

March 10, 2023 by Florence Boulton

Continuing to come together 2023 has already brought meaningful victories as we rally science to our support. In January we heard that NICE has …

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An overview of Translarna

February 22, 2023 by Lizzie Cox

Translarna (ataluren) is the first licensed treatment for an underlying genetic cause of Duchenne muscular dystrophy. It has been designed to target a …

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Starting 2023 with hope

February 2, 2023 by Lizzie Cox

Starting 2023 with hope I want to begin by wishing all of you a very happy new year and sharing the hope that 2023 will be a year of positive …

Starting 2023 with hopeRead More

2023 is the year of the half marathon and family friendly, fully inclusive events!

January 19, 2023 by Victoria Edwards

It’s been a busy few months building our 2023 Events Fundraising challenges. It’s set to be an amazing year, with so many amazing individuals signing …

2023 is the year of the half marathon and family friendly, fully inclusive events!Read More

Reflection and celebration

December 20, 2022 by Lizzie Cox

A blog by Florence, National Director As we move toward the end of 2022, I’ve been looking back on the year we've had and reflecting on both the …

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More than Hanging Out

December 9, 2022 by Lizzie Cox

More than Hanging Out Blog by Jess Breeze, Programme Assistant When I spent an amazing day with the Sporting Bears on 19th March, (see blog here …

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Our amazing week in Levi, Lapland

December 7, 2022 by Victoria Edwards

by Julia Marren, Duchenne parent to Lucas and Charlie We’ve never taken the boys abroad before; I was excited but worried. How would the boys cope …

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International Conference and Community

December 2, 2022 by Florence Boulton

International Conference and Community Blog by Florence, National Director Hello everyone! I am glad to be back sharing with you my updates …

International Conference and CommunityRead More

Festive Hamper Competition

November 30, 2022 by Victoria Edwards

*This competition has now closed and we are making contact with our winner!* As a thank you for supporting us this year we are are giving you the …

Festive Hamper CompetitionRead More

North Star Ambulatory Assessment (NSAA) and the Oxford Scale

November 25, 2022 by Victoria Edwards

There are two sets of scores, usually recorded in tables, that you may see on your children's clinic notes. If you are not sure what these mean please …

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