The UK's Motor Neurone Disease Association (MNDA) says that the fight must go on to find better ways of treating the disease.
This week it has been revealed that more than $100m (£76m) was raised to by people who undertook the viral ice bucket challenge in 2014 – funding big breakthroughs in discovering methods to treat motor neurone disease and associated illnesses.
One of these, Project MinE, discovered a new gene which can be targetted in the development of therapy.
Belinda Cupid, head of research at MNDA, told Julia Hartley-Brewer: "We were very fortunate to be one of the charities that benefitted hugely from the ice bucket challenge.
"As well as raising money, it also raised awareness of the disease.
"There is no cure [for motor neurone disease]. It's a rapidly progressing condition and one thing we need to do is understand it in order to develop effective treatment.
"[The Project MinE discovery] is one step closer to developing an effective treatment."
Listen to the full interview above