29 April 2021

One of the biggest barriers to living an independent life as a disabled person is the lack of suitable, accessible housing. 

This is why Duchenne UK is partnering with Pathfinders Neuromuscular Alliance, a charity run by and for adults with muscle-weakening conditions, to address the lack of choice and control over accessible housing for people with Duchenne muscular dystrophy (DMD) and other muscle-weakening conditions.   

The project was devised following the outcome of a survey from Pathfinders, which showed that finding suitable housing is the issue that adults with muscle-weakening conditions most want to address.   

Thanks to progress in medical research, people with DMD are now living longer, with many adults living into their 30s and some into their 40s and 50s. However, this progress brings with it an urgent need for improved planning and resourcing for adulthood. Currently, adults with DMD and their families are facing difficulties in accessing housing which allows for independent living. 

The Accessible Housing Project aims to address this issue by bringing together the DMD community with key government decision-makers and housing providers. It will be led by Dr Jon Rey-Hastie, CEO of Pathfinders Neuromuscular Alliance, and Dr Janet Hoskin from the University of East London. Through a series of focus groups and surveys, they aim to identify the housing needs of people with DMD and their families and explore the current barriers. Following this research, a Housing Working Group will be established to develop a campaign to address these barriers and propose solutions.  

Duchenne UK will be investing £15,936 in the project, which will run over the course of six months, and expect to be able to share results by the end of the year. 

Dr Jon Rey-Hastie shared his own experiences and aspirations for the project: “As an adult living with DMD, the lack of accessible housing has been a major barrier to me throughout my life, from not being able to live with friends at university to struggling to relocate for work and family. I have had to navigate a discriminatory, complex and inconsistent system to be able to live independently in my own home. It is my hope that through this project we can identify and take meaningful actions to provide more options for other people living with muscle-weakening conditions seeking to live independently.” 

If you have personal experiences of seeking accessible housing and would like to be involved in the project, please contact [email protected] to express an interest. 

We would like to thank our charity partner, Alex's Wish, and the following family funds for contributing to this project: Help Harry, Jacobi's Wish, Jack's Aim, Ralphy's Fund, Henry's Hurdles and Cure4George.


NOTES FOR EDITORS

About Duchenne UK

Duchenne Muscular Dystrophy (DMD) is a devastating muscle-wasting disease. It is the most common and severe form of Muscular Dystrophy. Diagnosed in childhood, it mainly affects boys. There is currently no cure. Started by families affected by the disease, Duchenne UK has one clear aim – to end Duchenne.

Duchenne UK are funding research that’s focused on getting treatments to those affected now – as well as pushing for an effective treatment in the future.

Duchenne UK connects leading researchers with industry, the NHS and patients to challenge every stage of drug development, from research to clinical trials to drug approval. They connect families with each other to create a network of mutual support and to pool resources, knowledge and experience.

About Pathfinders Neuromuscular Alliance

Pathfinders Neuromuscular Alliance is a user led charity, run entirely for and by people with neuromuscular disorders. They provide social and support services, a range of informational guides, events and outreach, and campaign on issues that matter to adults living with neuromuscular disorders.

How to donate 

COVID-19 has caused a funding crisis in medical research. But we cannot, and will not, let it slow us down in our mission to find new and effective treatments for DMD. Because this generation of boys cannot wait. Donate now, and together we will end Duchenne 

Duchenne UK is entirely reliant on donations. This can be done via: 

  • Direct Debit – Duchenne Direct 
  • Individual Donation – Donate 
  • If you are a family or friend affected by DMD you can set up your own fund with Duchenne UK – Family and Friend Funds 
  • Take part in one of our fundraising events – Events 
  • Text DUCHENNE to 70085 to donate £5. This costs £5 plus a std rate msg.