A charity inspired by a Wigan schoolboy helped to fund the first approved treatment in the UK for all patients with Duchenne muscular dystrophy.

Former Wigan Warriors player Andy Johnson and his wife Alex set up Joining Jack after their son Jack was diagnosed with the progressive muscle-wasting condition in 2011.

Since then they have raised millions of pounds for research, with many Wiganers contributing through events such as the Wigan 10k and Run Wigan Festival.

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Alex Johnson, second from right, with, from left, Sheli Rodney (Duchenne Research Fund), Emily Reuben (co-founder and chief executive of Duchenne UK), Prof Katie Bushby (Newcastle University), Prof Michela Guglieri (Newcastle University) and Prof Eric Hoffman (Binghamton University)

placeholder image — Alex Johnson, second from right, with, from left, Sheli Rodney (Duchenne Research Fund), Emily Reuben (co-founder and chief executive of Duchenne UK), Prof Katie Bushby (Newcastle University), Prof Michela Guglieri (Newcastle University) and Prof Eric Hoffman (Binghamton University)

The charity was keen to help find more treatment options for DMD, so it invested in and supported the development of medicine vamorolone.

Along with partner charities Duchenne UK and Duchenne Research Fund, it invested £750,000 towards a phase one clinical trial in boys with DMD in 2015.

It then advised on trial protocol and funded the clinical research site for the vamorolone phase two trial and the principal investigator, which enabled ReveraGen to secure a £6m grant from Europe’s Horizon in 2020 to support the development of the drug.

Project HERCULES, a multi-national collaboration to develop tools and evidence to support health technology assessments, provided crucial evidence about the impact of DMD to build the case for patient access to it.

The National Institute for Health and Care Excellence (NICE) has now approved vamorolone for use on the NHS to treat DMD.

Vamorolone, also known by the brand name Agamree, will be available to treat people aged four and over.

It was created as an alternative to existing corticosteroids, which are routinely used to reduce muscle inflammation and maintain muscle strength, but can have several negative side-effects.

Alex said: “We were given very little hope and few treatment options when our sons were diagnosed with DMD. We could not and would not accept that and have raised millions of pounds for research into new treatment options for DMD, one of which was vamorolone.

"We are very proud that a treatment that we have supported for so long will now be available in the NHS and of the investment we made in vamorolone.

"We made money from our investment and all of the money we receive will go into research for new DMD treatments.”