Ben Oakley is one of 20 people in Australia with Stiff Person Syndrome but on Sunday his focus was on those with Motor Neurone Disease.
Ben, 20, is the second youngest person with the extremely rare condition and does not know what the prognosis is because so little is known.
But he does know how he can help others. He did the Illawarra walk to d’feet MND in his wheelchair.
He was joined by his father Michael and family but was not keen on anyone pushing him and his smile never left his face.
“We have friends who have had MND. Everyone needs support. You can’t get through things without that,” he said.
Co-ordinator Shelly-Anne Demirov said it was the biggest turnout since the first walk in 2013 and was expected to take the total raised in Wollongong for the Motor Neurone Disease Association of NSW from $100,000 to $150,000.
From 10am at Bulli Beach close to 500 people rolled like a wave of blue towards Woonona and back.
“My dad always said one person can make a difference if they try..but this is fantastic. I am astounded. People ask me why a wear such a big pair of sunglasses. It is to hide my tears”.
She held the first walk to thank MND NSW for supporting her father Jim Demirov before he lost his 19-month battle in 2010.
MND robs people of their ability to walk, speak, move, swallow and eventually breathe.