Noel’s legacy

03 Mar, 2018

Over 40 million cells preserved for the Australian research industry.

In the September edition of Eyecure, QEI highlighted the story of Pam and Noel who had been married for over 50 years and who were both vision impaired.

Noel had a hereditary condition called Retinitis Pigmentosa (commonly known as RP with the effect of tunnel vision) and lost his sight completely in 1987. Pam meanwhile has Glaucoma and a long history of extremely low vision, after being born with no irises and she has also had cataracts removed.

Noel and Pam had both decided to donate their eyes to research and had been long-standing supporters of QEI having originally been patients of Professor Laurie Hirst, QEI’s former Executive Director from 1996 to 2010. Noel and Pam had given their time to be involved in QEI’s Education programs and Noel together with Professor Hirst was a staunch advocate for the vision impaired.

Just one month after QEI told Noel and Pam’s story, Noel sadly passed away. That meant that on the day of his passing on 19 October 2017, his heartfelt wish to donate his eyes for research could now be fulfilled and a prompt response was needed to ensure that Noel’s eyes would be in best condition for study.

Professor Damien Harkin, a senior scientist at QEI and Queensland University of Technology, had met with Noel to discuss his bequest prior to his passing. “It was a real privilege to meet Noel. He had hoped to donate his corneas for clinical use, but unfortunately he was not eligible due to having lung cancer. The next best option was to donate his eyes to research, and so I discussed with Noel and Pam how this would work and the type of information that could be gained from studying his eyes.”

Professor Harkin subsequently contacted several leading research groups across Australia to advise them of Noel’s bequest. “There was much interest, but a clear strategy had to be devised in order to best make use of Noel’s generous donation.” With the help of staff from the Queensland Eye Bank and interstate colleagues including Dr Fred Chen (Lions Eye Institute in Perth), a plan was developed.

On the day of Noel’s passing, QEI’s Community Relations Manager, Jane Dodds who had become a frequent visitor to the couple received a call from Pam with the sad news of Noel’s passing. As Jane recalls, “It was naturally with mixed emotions that I received the news at around 5:00 am. Pam was clearly saddened by Noel’s passing, but her commitment to ensuring that his eyes were collected promptly was really evident.”

Jane relayed the news to Professor Harkin and with his team they swung into action. “I spoke with the Queensland Eye Bank and we initiated our retrieval plan,” said Professor Harkin.

Having retrieved Noel’s eyes within a few hours of his passing enabled Professor Harkin to preserve the retinal tissue so it would be suitable for future study by electron microscopy. This would enable scientists to study in very fine detail the effect of RP on Noel’s retinas. But it was not just the retina that was of interest, other areas of the eye, including the cornea, would also be able to provide important information.

“While RP affects the retina, the genetic changes that cause this condition will be present throughout other cells in Noel’s body,” Professor Harkin explained. “So by growing cells from Noel’s corneas we could obtain an additional source of cellular material for genetic analyses and other studies.” These other studies include the potential use of Noel’s cells for developing gene-correction techniques that might one day be used to treat patients like Noel before they become blind.

Within one month of Noel’s passing, Professor Harkin had grown over 40 million of Noel’s corneal cells stored frozen in liquid nitrogen, in readiness for distribution to the Australian ophthalmic research community.

“We routinely grow cells from the relatively normal eyes of deceased organ donors, and generally this is with the view to developing cell-based therapies. The opportunity to assist donors like Noel in this way is a new experience for us, and one which we would be keen to continue in the future.”

QEI’s capability to help people fulfil their desire to donate eye tissue and ensure that QEI’s researchers and other groups in Australia can then utilise the tissue in their studies is all part of QEI’s purpose to SAVE SIGHT.

Professor Harkin adds, “It’s not just about how QEI can utilise a vital legacy like Noel’s but also how we can support other researchers throughout Australia via collaborating and enabling us to save sight of future generations via our Research and Clinical Trials.”