Today, 28th February marks #RareDiseaseDay.
Duchenne Muscular Dystrophy is a rare disease. A condition that affects 1 in every 3,500 boys born. Alex was diagnosed with this condition shortly before his 4th birthday. We were told he wouldn’t walk beyond 12 years. We were told a cure wouldn’t come in his lifetime. But, progress is being made. He’s on a […]
Golf Day 2022
Thursday 22nd September saw our 11th Alex’s Wish Charity Golf Day which took place at The Rothley Park Golf Course! We had such an amazing turn out and were lucky with the weather again, with just a brief shower. We welcomed 22 teams on the day raising over £9,000. The winning team was Revive POS, […]
Study paves the way for improved detection of heart disease in female carriers of DMD
A recent report from a study funded by partly by Alex’s Wish, in collaboration with Duchenne UK has improved understanding of early detection of heart muscle disease in female carriers of Duchenne muscular dystrophy (DMD), paving the way for further research. Women and girls who carry a mutated DMD gene (‘carriers’) can sometimes show mild symptoms of the […]
Alex’s Wish pledges £20,000 to Duchenne UK’s gene therapy grant call
Alex’s Wish has pledged £20,000 so far towards a £1 million grant call into treatments which will ultimately allow everyone living with Duchenne Muscular Dystrophy to receive gene therapy safely and effectively. Alex’s Wish are also hoping to pledge another £80,000 over the early Autumn months to support this project from their fundraising activities over […]
Italfarmaco announces positive topline data from Phase 3 trial showing positive benefits of Givinostat in Duchenne
Italfarmaco Group Announces Positive Topline Data from Phase 3 Trial Showing Beneficial Effect of Givinostat in Patients with Duchenne Muscular Dystrophy — Study meets primary endpoint with secondary and exploratory endpoints showing consistency with primary endpoint — — Data reinforces previously observed safety profile for Givinostat; treatment in boys with DMD continues to show a […]
Emma’s blog
It’s been a long time since I wrote a blog, I thought it time to put things into words on what’s been going on. These blogs are in essence a snapshot in time. It’s been a busy time of late. We’ve moved home, only a few miles from where we were. We were very happy […]
Happy New Year!
We just want to thank every single supporter “Wish Warrior” who has supported Alex’s Wish in 2016. We can’t thank you enough for everything you do for us and we would love you to continue supporting us in 2017 to help us bring about effective treatments for all boys living with Duchenne. Do you have […]
Alex’s Wish gives £50,000 grant to Solid-GT
Alex’s Wish partners with Solid-GT and funds important Gene Therapy Development We would like to thank all of our supporters who have enabled us to give a £50,000.00 grant to Solid-GT to support their Gene Therapy Development. “Solid is proud to establish meaningful and impactful relationships with DMD charities to accelerate the progress of as many […]
6th Annual Charity Golf Day best yet!
What a fabulous day we had at our 6th annual charity golf day on Friday, 30th September held at Rothley Park Golf Course in Charnwood, Leicestershire. Attended by 92 golfers (23 teams of 4 ball) from local businesses we were delighted with the turnout. Golfers enjoyed the club’s facilities, hob bacon rolls and refreshments delivered […]
Alex’s Wish attends Health & Technology Workshop
We were delighted to attend a workshop organised by Duchenne UK this week in London. The workshop was designed to understand the Health Technology Assessment (HTA) process in England, and to give an overview of health economics and the process of new drug approval and how the Duchenne community can come together to bring new […]