Alex’s Wish gives £100,000 to Duchenne UK’s Gene Therapy Grant Call

February 21, 2023 4:05 pm

Alex’s Wish has given a further £80,000 on top of the £20,000 pledged in 2022 towards a £1 million gene therapy grant call from Duchenne UK, the national Duchenne Muscular Dystrophy Charity.

The money will go towards research into treatments which will ultimately allow everyone living with Duchenne Muscular Dystrophy to receive gene therapy safely and effective.

The latest pledge has been made possible thanks to the generosity of UK charitable organisations, The Brothers Trust, who have given £20,000 and the With Love, Steph Foundation, who provided another £3,000. Both organisations support smaller local charities like Alex’s Wish who share their core values.  It has also been made possible because of the fantastic charity fundraising done by all the Miss Great Britain Finalists in the back end of 2022, who went on to raise a staggering £22,949 as well as the recent fundraising efforts by Alex’s Wish supporters.

This funding will help Duchenne UK build on the success of its clinical trials into therapeutic treatments for Duchenne, with the first trials coming to Britain in 2021.

Duchenne is a serious muscle-wasting disease affecting one in every 3,500 boys for which there is currently no cure.

Emma Hallam, CEO of Alex’s Wish, and mum to teenager Alex who lives with Duchenne, was delighted to received further financial support towards the gene therapy grant call.

She said: “We’ve seen incredible progress in gene therapy for Duchenne, but challenges still lie ahead. One of these challenges involves looking at how the immune system in some patients reacts to gene therapies. Some people have antibodies to the gene therapy viral vector, the vessel in which the genetic material is delivered to muscles, so they don’t qualify for this treatment. In addition, even those patients without antibodies will develop them after receiving gene therapy, so they won’t be able to have the treatment more than once.

“We are however, now seeing novel, promising approaches, leading the way for cell-based therapies and new gene therapies that use non-viral vectors. Alex’s Wish is supporting this vital research, helping to accelerate its progress so that one day everyone with Duchenne can have treatments safely and effectively.”

Trev Glynn, Founder of the With Love, Steph Foundation says “When Duchenne was recently highlighted to us by a friend of With Love, Steph we were heartbroken to read about the condition and the struggle for young boys living with it. We wanted to learn more and to try and help raise awareness too. We felt a connection when we began reading about Alex’s Wish brave story. We were inspired by their mission and their achievements as a family founded charity and knew we needed to help.

We were over the moon with the response to our fundraising event and we’re very proud to support to Alex’s Wish’s pledge to the Gene Therapy Grant Call, to ultimately allow everyone living with Duchenne Muscular Dystrophy to receive the promising therapy safely and effectively.”

Saffron Rose, National Director of Miss Great Britain says “We are absolutely thrilled to announce that Miss Great Britain 2022 finalists raised £22,949 for Alex’s Wish. Supporting Alex’s Wish is an absolute honour and a mission we are proud to be a part of. Our finalists worked incredibly hard to not only raise vital funds but also took great care and commitment in learning as much as they could about Duchenne. This resulted in them being able to raise important awareness with their family, friends, and supporters too. We look forward to supporting Alex’s Wish this year too.” 

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