North London father Mark Silverman is lobbying the government to fund more research into a life-limiting disease suffered by his son. Thomas, aged three, has Duchenne muscular dystrophy (DMD), a severe muscle-wasting condition that primarily affects boys and young men. It is currently incurable.
Last week, Mr Silverman helped coordinate a protest outside the Department of Health, calling for more government funding into the condition. A petition with more than 2,000 signatories was presented to Downing Street. The campaigners also met Health Minister Ivan Lewis and Dave Anderson MP, chair of the Muscular Dystrophy All Party Group, to press their case.
“Over the past few years, the level of funding into DMD research and clinical trials has been pathetic, especially when you consider what other money is being spent on,” Mr Silverman, 35, tells People. “We requested, among other things, that the government redress the historically poor levels of Duchenne research funding over the past 10 years by ringfencing £30m of funding for new Duchenne research and clinical trials.
“We will keep banging on the door and perhaps go all the way to the top — to the Secretary of State, even. But it’s a race against time because the condition is life-limiting.” He says: “Sadly, Thomas’s illness has completely changed our lives, but he is a happy little boy, and we are anxious to do whatever we can, in the face of poor government funding, to raise money to help find a cure.”
A town-planner at Hertsmere Borough Council, Mr Silverman is a director of Action Duchenne, a charity raising awareness and funds for research into treatments and a cure. He has been a committed fundraiser for DMD, which affects around 1,500 people in the UK. He has raised around £35,000 this year and recently organised a football match between an Arsenal ex-professional celebrity XI and an Action Duchenne XI, comprising Maccabi League and Maccabi Masters players.
Mr Silverman lives in Mill Hill and is a member of Mill Hill synagogue.