Author Archives for Emma Hallam

Italfarmaco announces positive topline data from Phase 3 trial showing positive benefits of Givinostat in Duchenne

July 4, 2022 1:10 pm Published by Comments Off on 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 good tolerability profile —  — The company is planning to discuss the potential for marketing application submission with regulatory authorities for Givinostat in DMD —  — Results were presented at the Annual PPMD Conference on June 25, 2022 —  MILAN, Italy, June 25, 2022 – Italfarmaco Group announced today positive topline data from its completed Phase 3 EPIDYS trial with Givinostat, the company’s proprietary histone deacetylase (HDAC) inhibitor, in boys with Duchenne Muscular Dystrophy (DMD)....


Emma’s Blog June 2022

June 16, 2022 11:10 am Published by Comments Off on Emma’s Blog June 2022

Wow doesn’t it feel like such a long time ago that we were all in lockdown. Spring has been a full-on fun-packed time, with birthday celebrations, charity events, clinical trial reviews, Jubilee celebrations, driving experiences, disability skiing… and that’s just the weekends!...


Sunday Spotlight – Gill Castle

June 9, 2022 11:56 am Published by Comments Off on Sunday Spotlight – Gill Castle

The birth of Gill Castle’s son changed her life forever. Not just in the fact she became a mother, but the trauma of childbirth left her with a permanent stoma, a surgery which someone in the UK undergoes every 39 minutes....


Football Tournament 2022

June 1, 2022 1:28 pm Published by Comments Off on Football Tournament 2022

A huge well done to the winners of our Football Tournament on Saturday – DT Systems Electrical Ltd – they took the trophy 🏆 from reigning champions Hallam Read who came second....


Spirit Pharmacy Charnwood Forest Cycle Ride 2022

May 18, 2022 10:10 am Published by Comments Off on Spirit Pharmacy Charnwood Forest Cycle Ride 2022

Our 10th Charnwood Forest Cycle Ride 2022 took place on Sunday and we were so lucky with the weather. Rain was predicted and we only got sunshine, a perfect day to cycle....


Sunday Spotlight: Rich Copson

May 8, 2022 7:12 pm Published by Comments Off on Sunday Spotlight: Rich Copson

We all have things that we want to hide. Secrets, embarrassing stories, a whole host of information that must be kept out of the public eye....


Sunday Spotlight: Archie’s Army

March 20, 2022 8:21 pm Published by Comments Off on Sunday Spotlight: Archie’s Army

Just like our Alex, and so many young boys in the country, eight- year-old Archie has Duchenne. Here, his Mum Sam Hurst tells trustee Tom Carter how the muscular dystrophy diagnosis changed their family’s world and inspired them to start their own charity....


Alex’s Wish encouraged by Solid Biosciences gene therapy project update

March 8, 2022 2:50 pm Published by Comments Off on Alex’s Wish encouraged by Solid Biosciences gene therapy project update

We have received an encouraging update on a gene therapy research project that we helped to fund. In 2016 the charity invested £50,000 with life science company Solid Biosciences Inc in support of its IGNITE DMD clinical trial study for SGT-001 gene therapy....


Prepare for Emergencies with the Duchenne UK App

March 8, 2022 2:26 pm Published by Comments Off on Prepare for Emergencies with the Duchenne UK App

When Amanda’s son Tomos-William fell forward in his shower chair, she didn’t know that, because of his DMD, he was vulnerable to certain complications. ...


Sunday Spotlight: Sophie Grace Holmes

March 4, 2022 3:46 pm Published by Comments Off on Sunday Spotlight: Sophie Grace Holmes

In the UK today, more than 10,000 people suffer from the life-threatening lung disease cysticfibrosis – that’s one in every 2500 babies born....


We’re Hiring

February 8, 2022 4:52 pm Published by Comments Off on We’re Hiring

Alex’s Wish seeks part-time paid admin assistant Would you like a rewarding part-time paid admin role? Well, how about working  for a local  organisation that’s really making a difference to people’s lives....


Support from Alex’s Wish helps fund Duchenne Muscular Dystrophy (DMD) Clinical Trials Lectureship.

January 28, 2022 1:51 pm Published by Comments Off on Support from Alex’s Wish helps fund Duchenne Muscular Dystrophy (DMD) Clinical Trials Lectureship.

We are delighted to report the outcomes of our grant for a Duchenne Muscular Dystrophy (DMD) Clinical Trials Lectureship. The grant, which was supported by a consortium of seven UK charities, saw Alex’s Wish joined by Duchenne UK, Action Duchenne, Duchenne Research Fund, Duchenne Now, Duchenne UK, Harrison’s Fund and Joining Jack to invest a total of £250,000....


Thank You to our Wonderful Ambassador Rich Copson

January 27, 2022 5:21 pm Published by Comments Off on Thank You to our Wonderful Ambassador Rich Copson

A huge thank you to Rich Copson, for being one of our wonderful Ambassadors for Alex’s Wish Our charity is held together by all the wonderful supporters we have, Rich Copson, being one of our longest serving Ambassadors and good friend....


Time to Expore Ball 2021

November 24, 2021 1:52 pm Published by Comments Off on Time to Expore Ball 2021

It was amazing to see so many supporters at our Charity Ball on Saturday, amazing memories made and what made it so very special is that our very own Alex was there as well....


Alex’s Wish Supporters Lunch 2021

October 11, 2021 8:45 am Published by Comments Off on Alex’s Wish Supporters Lunch 2021

On Friday 8th October we held our Supporters’ Thank you Lunch at the Novotel in Leicester. It was a great event and so good to be able to invite all our supporters, in person, to thank them for all that they had done for us over the last 18 months....


Golf Day 2021

September 27, 2021 8:44 am Published by Comments Off on Golf Day 2021

A huge thanks to everyone that came along to support Alex’s Wish 10th Golf Day! What a great day – fabulous sunshine, great company and we raised an incredible £10K!...