Cancer funding Stan’s saviour grateful
The researcher who helped save the Kiwi star’s life is now on the receiving end of much-needed funding, finds Kate Robertson.
The cancer researchers Stan Walker is set to donate some of his ticket sales to, say the gesture shows their work is valued. Walker has announced a portion of the money from every ticket sold for his upcoming tour will be donated to the University of Otago Translational Cancer Research (Te Aho Matatu), headed by Professor Parry Guilford.
Responsible for discovering the rare, cancercausing gene mutation that has killed more than 25 members of Walker’s family, Guilford told Stuff, ‘‘It is often difficult to get funding to research rare diseases. This makes donations very important for keeping the work going.
‘‘However, the biggest thing with a donation can sometimes simply be the message it sends to the researchers – your work is important and you mustn’t give up.’’
Dunedin firefighter Isaia Piho also has the CDH1 gene mutation and had his stomach removed in 2012.
Guilford’s research has not only saved his own life, but that of his children, so he’s grateful Walker’s donation will help the research to continue.
‘‘For me, Parry’s ongoing research is really about giving my children a choice, and a chance to live a normal life, free of cancer. Through his research, he’s given people around the world hope to be diagnosed early, where cancer is treatable. For that he really is a lifesaver.’’
Having seen first hand where the money goes, Piho noted that just because the centre is part of the university, that doesn’t mean it’s rolling in cash.
‘‘When you think of charities, you think of organisations like Cure Kids or KidsCan. Research is often associated with organisations that are well funded. Universities have mountains of money, but it’s definitely not always the case for the research Parry is doing.
‘‘They’ve had to work really hard for the dollars and cents they’ve got.’’
Piho’s mother died just weeks before his 21st birthday. He first found out about the Guilford’s work when, several years later, his sister began experiencing similar symptoms.
‘‘We found out there was a gene mutation and the options were that you get tested every six months to ensure you don’t have any cancer cells developing in your stomach, or you have an elective surgery.’’
Since Walker went public with his journey, most notably in the documentary Stan, Piho said he’s ‘‘definitely’’ observed an increase in interest around the mutation, and how it impacts those living with it.
‘‘The documentary made it easier to explain some of the trials and tribulations through that process. I guess it put a face to what was experienced.’’
Piho added that Guilford’s research is not only saving lives in New Zealand, but across the globe.
‘‘There are people all around the world finding out that they have this mutation, particularly in the United States, and it’s amazing because his work is allowing people to actually live. He’s saved a lot more lives than I have as a firefighter, that’s for sure.’’
University of Otago academic Dr Karyn Paringatai, who had her stomach removed in 2010 after learning she had the CDH1 mutation, echoed Piho’s sentiment.
‘‘Parry’s ongoing research is really about giving my children a choice, and a chance to live a normal life, free of cancer.’’ Isaia Piho
She said donations such as Walker’s went ‘‘an incredibly long way’’ in keeping the centre going.
‘‘With a research centre like Parry’s, [they are] always looking for external sources of funding to be able to do what they can do.
‘‘Without donations from people like Stan Walker, and without publicity being done by those of us who are affected by the gene, and without big funding agencies coming on board with [their] work, he [Guilford] wouldn’t be able to do what he does.’’
Guilford said the donation made of proceeds from Walker’s 12-date New Zealand tour would be used to support ongoing research into the development of drugs to prevent breast and stomach cancer in families with mutations in the CDH1 gene.