World Duchenne Awareness Day

Please Share and Invite your friends!

Friday the 7th of September marks World Duchenne Awareness Day 2018. The Trust has supported this occassion since it commenced in 2015.

Previously, we have supported the International Duchenne Community by releasing 79 Red Balloons . These 79 Balloons represent the exons within the Dystrophin Gene. It just takes a fault on any one of these to cause Duchenne.

Whilst releasing the balloons is very symbolic gesture, given we live in a rural community we would rather not release balloons, as even using the biogradable ones is not without risks to animals, birds and the environment. As an alternative, and to show our unwavering support, this year Jacqui Snype invited people from all over the World to make small red squares out of wool. These squares are to represent Love, Hope and Remembrance for everyone affected by this vile disease.

We will ask you to tie the squares around the tree trunks in the park (as we did with ribbons a few years ago!). The children loved doing this and hopefully they will enjoy this too!

To ensure these beautiful squares are put to good use, once they are taken town, The Knockcroghery Knitters have kindly offered to knit them together! They will make blankets that will be sent to The Gorodischche Orphanage in Belarus. Gorodischche is an organization very close to the heart of this community and we are so happy that Archie, George and Isaac can gift these blankets to other children.

We wish to express our sincere thanks to every single person who has contributed to this endeavour! The squares have come from around the globe and we are SO GRATEFUL. We are also incredibly thankful for the on going support and kindness we receive from The Knoccroghery Knitters; they are all AMAZING!!

We really look forward to seeing you on Friday.

You have no idea how much your support means to us as we continue to try and escape from this nightmare.

#Duchenne #WDAD2018 #NoTreatment #NoCure #NoWords


Posted in Events, News

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