Ian Pratt was diagnosed with the disease back in 2012 at the age of 42, an illness which is yet to have a cure, followed by months of tests that were triggered by muscle cramps and fasciculations dating back to 2008.
The Ian Pratt MND Foundation was established to provide support to people living with MND to raise awareness and to fund research into find a cure.
Ian’s wife of 11 years, Catherine McGaw Pratt, 50, of Monk Bretton, told the Chronicle: “He was the most amazing, brave and dignified man there ever could be.
“I’ve known him since 1992 and we ended up getting married in 2009, the friendship was there first and he was such an amazing husband.
“When he was diagnosed in 2012 it was such a shock for all of us - we all knew it was a death sentence.”
Ian and Catherine’s daughter, nine-year-old Georgiana, was a huge influence on Ian’s life and one of the reasons he fought for so long.
“He was a super hero dad to Georgiana - he did so much for her even though he could do very little in terms of movement,” she added.
“Ian really did live for her and he wanted to see her grow up, she is a part of his legacy.”
Ian, who moved to Barnsley from Australia in 2002, set up the foundation after his diagnosis as he wanted to raise as much money and awareness for the disease as he possibly could.
“The foundation really is his legacy, he wanted to help as many people as he possibly could by raising awareness for the insidious disease,” she added.
“Since the foundation started we’ve been doing lots of fundraising events, and every year there’s a ‘Swim the Solent’ challenge, but that had to be cancelled this year due to the coronavirus.
“Everyone that met Ian was touched by his words, he made your heart go warm.”
Ian died last Wednesday, and a post was shared the following day on his social media page which was subsequently shared over 50 times - and a total of £1,500 has been raised since his death.
Ian was cremated on Tuesday morning in a service which no-one attended, not due to lockdown restrictions, but it was Ian’s wish.
“When I posted the announcement on Facebook the support we received was great, it wasn’t just his friends that were commenting - it went global,” she said.
“We’ve had someone from Argentina, who has MND, commenting on the post and there’s been lots of tributes to him following his cremation on Tuesday morning.
“Ian loved the song ‘Somewhere Over The Rainbow’ by Faith Hill, and as soon as I posted that there were lots of lovely photos - from all across the globe - being sent in raising a toast to his life.
“It was an emotional morning but we were kept in the know about what was going on, we’re going to hold a ceremony afterwards and I know his mum is planning a memorial back in Australia because they’re a bit further ahead than us in regards to lockdown.”