Raising funds and awareness for Cure Kids will be the focus of Cure Kids team members Rob Nichol, Richie McCaw, Sarah Fairmaid and Ben Meyer when they step across the start line this Saturday.
The team is one of 70 competing in the Tasman GODZone adventure race that kicks off from Kaiteriteri early on Saturday morning, April 2.
New Zealand Rugby Players Association CEO Rob Nichol says Cure Kids is the team’s motivator for racing GODZone.
“We have had an association with Cure Kids over a long period of time and for us we are all about our communities and our children. We want to support their breakthrough research that is literally saving children’s lives.
“As a team when we talk about having resilience and the mental toughness to complete GODZone but that is nothing compared to what these kids and their families have to face. We are choosing to do the event whereas these kids don’t and that’s when true resilience comes to the fore,” says Rob.
One of the Cure Kids current research projects is Late Infantile Batten disease which is a rare genetic condition, affecting the brain, causing neurodegenerative disease. The effects of the disease can be compared to a child having a combination of Alzheimer’s, Parkinson’s, epilepsy and blindness. Sadly, there is currently no cure, and no effective treatments to slow the progression of the disease – it always results in premature death.
Parent Lisa Archer knows first hand the challenges faced by children with Late Infantile Batten disease.
“There won’t be a cure for my daughter’s illness in her lifetime (Late Infantile Batten disease), but Rob, Sarah, Ben and Richie are helping to ensure that the next families that are given this awful prognosis will face a different outcome to what we have faced with Katie,” says Lisa.
“It means the world to me that there are people out there who are prepared to put their bodies and minds on the line, ultimately to help children like our daughter Katie.
“The GODZone race is incredible and it says something really great about humanity that there are people who continue to take on challenges like this in the hope that children all over the world will get to live a healthy childhood.”
Cure Kids funded research is aiming to replace gene mutations, which cause Batten disease, with corrected copies of the genes. This is known as gene vector therapy and uses a virus to do what it knows best; infect cells.
GODZone will be the first race for ex All Black Richie McCaw who has spent time training with well-known adventure racer and fellow team member Sarah Fairmaid over the summer.
Sarah Fairmaid says she enjoyed spending time with him.
“We spent as much time as we could paddling lakes and rivers to up skill him particularly on water sections. He learns really quickly and has a lot of skill and experience that is complimentary to adventure racing.
“The training has been focused on exposing him to lots of different situations. He is good on the bike and on his feet and is a bright guy with really good ability. You only have to tell him things once which is great.”
A text campaign has been set up for people to donate directly to Cure Kids while supporting the team by texting Godzone to 933 to make an automatic $3 donation.