Next week will see Hucknall parents Andrew Dawkins and Sarah Finney take their Battle Batten campaign to London.
On Tuesday 17th June the couple, whose twin boys have the rare neurological condition called Batten Disease, will take part in an open day at leading research and teaching university, King’s College.
The pair will get the chance to meet scientists from the field of research into Batten’s and other similar neurological conditions as well other parents and family members affected by the condition.
“It’s a chance for everyone interested to get together and share research, information and personal experience of this devastating disease,” said Sarah of Annesley Road who said the day is exhausting but worthwhile.
“The scientists learn from the parents and we learn from them about any medical or pharmaceutical advancements there may have been. It’s a two-way process.
“It’s extremely draining as you are absorbing so much information but worthwhile in finding out as much as we can to help Freddie and Louie.”
Andrew and Sarah are also looking at travelling to Argentina later in the year for the international conference into degenerative neurological conditions.
“You can’t learn everything from the internet unfortunately and although it is an awful long way to go for just three days it’s vital in learning first hand from the scientists and medical professionals about the latest advancements, medicine or advice currently available,” explains Sarah who wanted to stress that none of the money raised through the campaign would be spent on these trips.
“We are hoping to get charitable sponsorship to support our travel and the organisers usually set up accommodation in student dormitories.
“Seeing the people in the know keeps our family in their minds and hearts so they can relate not just to the condition but to those whose lives are affected by it on a daily basis,” added Andrew.
“It can be very overwhelming and takes a while to process the information gathered at these events but it also enables us to make the necessary contacts we need to give us hope for the future for our boys.
“Unfortunately it can also be heartbreaking as we meet other parents whose children have lost their battle with batten - but we can’t give up.”
The campaign is continuing to build supporters from far and wide with many more people offering to do whatever they can to enable a new research programme into the particular strain of the disease Freddie and Louie have.
Andrew added: “We continue to be astounded by the community.”