Family and Friends Funds THANK YOU!

We know that the people who are most passionate about raising money to find treatments and a cure for Duchenne Muscular Dystrophy are those who live with it every day.

We would like to say a huge thank you to all our Family and Friends Funds. Our Family and Friends Funds provide vital support to Duchenne UK by fundraising for us and helping us to advocate to accelerate research. They share our ambition to fund the most promising research, no matter where it is in the world, and to do so with a vision to help bring that research out of the laboratory and into the clinic where it can help patients.

Here is a selection of photos from just some of the fantastic fundraising our family funds have done over 2017.

Jacks Mission
Anna and Mark Clarke put on a Dinner to raise money for Jacks Mission.

Lygo family fund
Ran the Duchenne dip ‘Swimming for a cure’.

Team Felix
Put on Fefest, a fantastic summer festival!

Help Harry
Thank you to Gareth Halpin who took part in the Duchenne Dash 2017!

Chasing Connors Cure
The Crawfords got a great team together for the Duchenne Dash 2017!

For Felix
Ali took part in the Dash Max (cycled London to Monaco!) and Robyn took part in the 2017 Duchenne UK Triathlon.

Team Dex
Have done a variety of fundraising from 10k runs to a Halloween fundraiser!

Latest

Archie's March

In our darkest moments we chose to not let Duchenne define either Archie or our family but instead to start fund raising and join the fight to end it.
Patient Perspectives in DMD

We are doing some interviews on how Duchenne muscular dystrophy affects people and their lives, and, in particular, what aspects are most important in determining a good quality of life in people with DMD. The study will involve taking part in an interview with a researcher from the University of Sheffield.
Archies March

In our darkest moments we chose to not let Duchenne define either Archie or our family but instead to start fund raising and join the fight to end it. With hope and huge, huge thanks, Beccy, Alex, Archie and Freddie
Cheshire Dash raises over £112,000 for Duchenne UK

The Cheshire Dash took place in July, it is a 2-day challenge where 90 cyclist rode 200 miles across the beautiful Cheshire countryside AND raised over £112,000 for Duchenne UK. The event was organised by the Cheshire Flyers on behalf of Transforming Lives Charity. The Duchenne Dash spin off event will help us End Duchenne.

Patient Perspectives in DMD

We are doing some interviews on how Duchenne muscular dystrophy affects people and their lives, and, in particular, what aspects are most important in determining a good quality of life in people with DMD. The study will involve taking part in an interview with a researcher from the University of Sheffield.
Cheshire Dash raises over £112,000 for Duchenne UK

The Cheshire Dash took place in July, it is a 2-day challenge where 90 cyclist rode 200 miles across the beautiful Cheshire countryside AND raised over £112,000 for Duchenne UK. The event was organised by the Cheshire Flyers on behalf of Transforming Lives Charity. The Duchenne Dash spin off event will help us End Duchenne.
VISION-DMD: Interview with Alex Johnson

Alex discusses with Vision-DMD how the charities have directly funded clinical trials and research projects, co-funded clinical trial staff, and supplied direct research grants. She also discusses how DMD Hub expands trial capacity in the UK and our work to combat delays in drugs reaching the patients, instigating Project Hercules.
SAREPTA GENE THERAPY TRIAL PUT ON HOLD

Sarepta have been asked by the FDA to put on temporary hold their clinical trial looking at the safety and efficacy of their gene therapy treatment. The Phase 1/2a clinical trial has been put on hold due to an 'out-of-specification production lot'. We have written a summary of their press release to help the Duchenne community better understand the situation.
Team 3 Peaks for Project GO raise over £10,000 for Duchenne UK

Earlier this month, a team of 9 wonderful supporters embarked on the National 3 Peaks Challenge: climbing Ben Nevis, Scafell Pike and Snowdon within 24 hours to raise money for Project GO and Duchenne UK. Project GO have recently joined Duchenne UK as a family fund to raise awareness and vital funds to END DUCHENNE.
Duchenne UK commits a further £60,000 to investigate soy products as a potential new treatment approach for DMD

Duchenne UK and Joining Jack have granted Professor Steve Winder a further £60,000 to continue to investigate the use of soy products as a treatment for DMD. We have now invested £135,000 towards Professor Winder’s investigation.
Patient Group Consultative Forum at the MHRA covered the Early Access to Medicines Scheme and Brexit

Last week we attended a Patient Group Consultative Forum (PCGF) at the Medicines and Healthcare Products Regulatory Agency (MHRA). The meeting covered topics including the early access to medicines scheme (EAMS) and Brexit. Read our summary of the meeting.
PPMD Conference Update: Blog 2: Care Considerations

In this second blog, we focus on Care Considerations for DMD. Alex Johnson, our co-founder, took the following notes at various sessions at PPMD’s annual conference. We are working with other patient organisations to create the UK family friendly guide to understand the new and updated advice on how to care for your child.
PPMD Conference Update: Blog 1: Gene therapy for DMD/BMD

Blog 1: Gene therapy for DMD/BMD. The Duchenne community gathered in Arizona for PPMD's annual conference to learn more about the latest developments following exciting preliminary results from the Nationwide/Sarepta’s micro-dystrophin gene therapy. We wanted to share with you the notes taken during the presentations.
First patients dosed in charity funded clinical trial, to test the safety and effectiveness of Tamoxifen as a treatment for Duchenne Muscular Dystrophy

Duchenne UK has worked closely with the team in Switzerland to help get this trial up and running, and has committed £575,000, along with E-Rare, Duchenne Parent Project in Holland, and the Monaco Association against Muscular Dystrophy.

Duchenne Dash 2019

London to Paris in 24 hours, by bike! Please contact us to register interest for 2019 [email protected]
Meet The Team

Our co-founders Alex Johnson and Emily Crossley met after their sons were diagnosed with Duchenne muscular dystrophy. They both set up charities, Alex with Joining Jack, Emily with the Duchenne Children’s Trust.
Understand Duchenne

Find out more about DMD and how we can help you
The Impact Of Brexit On Rare Diseases

Please read and share our paper on the impact of Brexit on rare diseases.
Welcome To Duchenne UK

Duchenne Children's Trust and Joining Jack have joined forces to create Duchenne UK, dedicated to funding and accelerating treatments for Duchenne Muscular Dystrophy.
Girls living with Duchenne

Duchenne affects approximately 1 in every 3,500 boys that are born but only around 1 in every 50 million girls. It may be rare, but it does happen. We have been speaking to Feriel, a 26 year old woman living with Duchenne muscular dystrophy. She has written us a short blog about her experiences with Duchenne from diagnosis to now.
How You Can Help

Join Us to End Duchenne
What Are The Stages Of Duchenne?
Gene Therapy Overview

An exciting new gene-based therapy on the horizon
Diet

A healthy diet is vital for patients with DMD, especially foods high in Vitamin D and calcium