End of Year Update from Emma

December 20, 2018 9:07 pm

As 2018 comes to end, I wanted to share with you an update on how this year has gone. For a start, it’s been our best year in terms of fundraising. In the last 12 months we have generated over £230K of income and we would like to thank every single person and company who has helped us achieve this.

It’s meant that we have been able to fund important projects alongside Duchenne UK to help bring meaningful therapies to all boys living with Duchenne Muscular Dystrophy, including £30K into a Tamoxifen Open Label Extension Study, £60K into a Gene Therapy Project, £37K into a Heart Study, £35K into Repurposing Drugs, £10K into expanding Clinical Trial Capacity at Birmingham’s Heartlands Hospital and £35K into a new Assistive Suit with Solid Biosciences. None of this would have been possible without our loyal and amazing supporters – we just want to say a BIG thank you.

It’s been a busy year, both Zoe and I alongside our fabulous Trustees are constantly working hard to bring you new fundraising challenges and events that our supporters (new and old) and take part as well as create amazing memories that will last a lifetime!

We want to thank Duchenne UK for all their hard work in supporting us to fund new and exciting projects and very much look forward to hearing their future plans for the coming year.

2018 saw the launch of our new Business Club and we are thrilled to have a number of businesses already on board with us we will continue to grow and develop this Club next year.

Our amazing business supporters who have organised balls, golf days, ran, cycled, walked, jumped out of planes – you have all made a HUGE IMPACT on our fundraising this year – we couldn’t have done it with you and we give thanks to you all and very much look forward to working with you all in 2019.

All of our hard work is recognised by Alex, and he’s so grateful to everyone for the support this gives both him and to all boys living with Duchenne.  We give families choice and hope – choice to be able to choose what clinical trials they want to take part in and hope that one day our boys will have new effective treatments – and ultimately a cure to help them live a longer and more fulfilled life.  This is the time of year where we remember those who have had a difficult year because of the devastating impact Duchenne has.

A quick update on Alex, we are exciting to be going back up to Newcastle in January as he will be taking part in a number of different tests to see if we can get him onto another Clinical Trial.  Despite the setbacks in 2018, Alex is raring to go again and do his part in finding new treatments for all. We wish Alex all the luck in the world and will update you on how things go.

Thank you for supporting us in 2018 and we hope you continue to be by our side and continue along this journey with us.  Please keep an eye open for our new and exciting events coming and get in touch with us if you would like a new challenge in 2019 or to support in other ways like volunteering your time or skills, we would love to have you on board.  Next year we hope to hit our £1M raised target we set ourselves when we first went on this journey – how amazing will that be.

If you haven’t already signed up to our e-newsletter please do so here so we can keep you updated.

Wishing all of our amazing supporters a wonderful Christmas and a very happy, prosperous and healthy new year.

With love and very best wishes,


Emma X


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