£100,000 is latest cash milestone reached by charity with a LIFE wish
ROTHLEY-BASED charity Alex’s Wish has reached a milestone in its efforts to combat the devastating condition Duchenne muscular dystrophy.
It has donated £80,000 to national charity Duchenne UK to help fund research into gene therapy. This, on top of the £20,000 pledged in 2022, takes the total donated by Alex’s Wish to £100,000.
Alex Wish was set up in 2012 by Emma and Andy Hallam, whose son, Alex, has Duchenne muscular dystrophy, a muscle-wasting disease affecting one in every 3,500 boys. There is currently no cure and children with the condition are unlikely to live beyond their 20s.
The money will go towards research into treatments which will ultimately allow everyone living with Duchenne muscular dystrophy to safely receive gene therapy.
The latest pledge from Alex’s Wish has been made possible thanks to the generosity of national charities The Brothers Trust, which gave £20,000, and the With Love, Steph Foundation, which provided £3,000. Both organisations support smaller local charities which share their core values. Towards the end of last year, £22,949 was also raised by the Miss Great Britain finalists through a variety of fundraising efforts. Alex’s Wish supporters locally have also raised funds and awareness.
The £80,000 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. Emma Hallam, CEO of Alex’s Wish, and mum to teenager Alex who lives with Duchenne, 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, said: “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 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 ultimately allow everyone living with Duchenne Muscular Dystrophy to receive the promising gene therapy safely and effectively.”
Saffron Rose, national director of Miss Great Britain, commented: “We are absolutely thrilled to announce that Miss Great Britain 2022 finalists raised £22,949 for Alex’s Wish. Supporting it 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 continuing to support Alex’s Wish throughout 2023.”
We’ve seen incredible progress in gene therapy for Duchenne muscular dystrophy, but challenges still lie ahead.
Emma Hallam