Duchenne UK joins forces with The Patrick Trust, Joining Jack and Alex’s Wish to invest in heart research

Duchenne UK is partnering with three charities to launch its first grant call focusing solely on research into the Heart.

The grant, called Help the Heart, is worth up to £1.5million, and will fund ambitious projects to understand and treat the hearts of people with Duchenne muscular dystrophy (DMD). The Patrick Trust is committing £200,000 over 3 years. Funding will also come from Duchenne UK’s fantastic partner charities, Joining Jack and Alex’s Wish.

What Duchenne UK is looking to fund

Duchenne UK will fund ambitious, translational or clinical projects which address the following areas:

• Understanding the unique features of the DMD heart and cardiac disease progression in DMD
• Innovative treatment strategies and approaches (e.g. who and when to treat, young patient, early disease stage versus older patients, advanced disease stage), in the context of the latest clinical recommendations and cardiac standard of care for DMD
• How to evaluate the cardiac response to therapies better
• Characterisation of heart phenotypes in DMD to help understand the efficacy and safety profile of disease-modifying treatments

Two funding strands

To maximise the impact of its funding, Duchenne UK has divided the call for research projects into two strands:

• Strand one – ‘Help the Heart’: This cardiac themed open research call will run until the end of 2024 with a broad scope, but focused on the cardiac unmet needs in DMD, using Duchenne UK response-mode funding model. Please find more details here.
• Strand two – A therapeutic focused call: This will launch in March for six weeks, to expression of interest applications. More details on the scope and eligibility will be published in due course.

Help the heart

Inviting applications, Emily Reuben OBE, Co-founder and Chief Executive of Duchenne UK, says:

“We are delighted to be launching this ambitious grant call, which we hope will draw out new treatments for cardiac care. This is a critical area for people with DMD, and we hope to be able to encourage the development of new treatments to help the heart. We are hugely grateful to our partner funders to enable us to offer a transformative amount of funding for this project”

Julian Pritchard, Trustee of The Patrick Trust, said:

“The Patrick Trust is very happy to be joining forces with Duchenne UK, Joining Jack and Alex’s Wish on this crucial area of research. Timely access to the right cardiac treatment can be game-changing in the overall care of people with Duchenne muscular dystrophy, and we hope to fund research that makes a significant difference to it.”

Emma Hallam, Founder of Alex’s Wish, and mum to Alex aged 17, said:

“With a teenager living with Duchenne ourselves, we understand first-hand the priority of heart health. Time and time again, we hear of boys losing their lives far too soon of heart failure. This has to stop. We are incredibly proud of supporting this important work to help save and extend lives of everyone affected by Duchenne.”

DMD and the heart

DMD is a muscle-wasting disease that affects all muscles in the body, including the heart. Despite this, there is a huge clinical unmet need in cardiac management and effective therapies for the DMD heart. This leads to poor outcomes for people living with DMD, and Duchenne UK wants to change this.

DMD is a genetic disease that almost always affects boys, and there are approximately 2,500 people in the UK living with DMD. While there is currently no cure for DMD, there are drug therapies that can slow down DMD progression and improve quality of life. However, cardiac complications, including sudden heart failure, are the primary causes of mortality in DMD. This is sometimes in very young people with DMD.

Eligibility

Funding is open to universities, research institutes and small companies (micro and medium) worldwide. Projects are expected to last up to two years, with total project costs up to £500,000. Higher project costs may be considered subject to how many projects will be funded. Matched funding from other funders will be considered for projects with costs above £500,000.

Submission process

Projects will be accepted until the end of 2024, and Duchenne UK might close the call earlier, subject to level of engagement in the research community and number of proposals received.

Expression of interest proposals or enquires can be submitted toresearch@duchenneuk.org,referencing ‘Cardiac Themed Call EOI’ in the subject of the email. If deemed appropriate, Duchenne will invite you to submit a full proposal using our standard template.

---