How Ruby Red Foundation aims to bolster research and grants program with human-centred design
- 01 August, 2018 10:02
The Ruby Red Foundation is fostering a design-thinking approach to bolster its research and grants program.
The intention is to unravel life-changing findings, educate the community on its mission and provide ongoing support to people living with a rare form of blood cancer.
The foundation is committed to raising vital funds for research into chronic, rare, blood cancers called Myeloproliferative Neoplasms (MPNs), unravelling the disease process, its cause and ultimately finding a cure.
The plan is to first lay the groundwork for an effective research and grants program, and then to build on that success by providing a design-led approach that would rely on multidisciplinary views and thinking, according to director of strategic planning, Jonathan Prosser.
“The first step would be in using a human-centred design approach to shape grants, which will form the collision of different fields, areas of thought and sectors. We want the sparks to fly as we seek to enable really amazing people and researchers to hopefully uncover life-changing findings," he told CMO.
“This is where art and science will come together: The art of science. This will hopefully unlock real breakthrough in science.
This will see the foundation effectively marketing to a different crowd, “in a different pond” thanks to the design-led approach, Prosser said.
Formerly head of ventures for Sharks, and group GM of strategy and growth for the Cronulla Sharks Rugby League Football Club, Prosser said he’s relying on his expertise in building an innovation lab while with the Sharks - where he was able to test and experiment - to rev up innovation at the Ruby Red Foundation.
“I always try to build a multidisciplinary approach, so I don’t want a load of MBAs and I don’t want a load of management students. I want a blend of interests, ages and world views and nationalities," he said.
“Just as my innovation lab caused a collision of world views and people - because I believe when you get those views together the sparks fly - we want to create a grants program that will do the same.”
While the design-led approach is still in the works, Prosser said taking the research and grants program to the next level is a prime example of deep engagement and innovation on the part of a non-for-profit.
“The design-thinking approach suggests how we can we create the conditions that will make it more likely for true innovative breakthroughs to happen. Therefore, we want to create a grants program that would enable those conditions,” he explained.
“I believe in true breakthrough ideas: Things that could have an impact on a world scale. We’re in a blessed position where the work we’re doing here to serve this charity is seeking to deliver life-changing outcomes for people.
“Ultimately, we want to create a grants program that will help sparks fly. It would be a multi-disciplinary, multi-institution, multinational and multi-ethnicity approach.”
Like Prosser, all foundation members recognise the need to beef up the research and grants activities, and get creative in its approach, in order to create an impactful message and promote the cause today and into the future and keep it sustainable, managing director, Sophie Gibson, told CMO.
“Rather than throwing money at marketing or things that we can’t really afford at the moment, we’re focusing our efforts on targeted research grants.”
Gibson, who has a background in healthcare marketing, launched Ruby Red after her youngest daughter was diagnosed with a rare blood cancer at the age of one.
“I was trying to find out information for myself and really struggled to find anything in Australia and it’s much more rare in the pediatric population. But there was nothing to support adults, and I thought given it’s a rare disease, I want her to have a support network and to also make sure there is research into the future. So I thought I’d start a charity,” she explained.
“As a mother, I worry about the long-term effects of treatments used to reduce the risk of bleeds and clots, quality of life and whether my daughter’s illness will progress to myelofibrosis or acute myeloid leukaemia (AML) and wish there was a way to stop it, or a cure to make her cancer go away.”
Gibson said patients live with debilitating symptoms and harsh side effects, as current treatments aim to reduce the risks of bleeds or clots but do not prevent the risk of disease progression to AML or myelofibrosis and there is currently no cure.
“To be able to understand why disease progresses in some patients and not others may lead to treatments which slow or prevent progression to myelofibrosis. Reducing the need for invasive bone marrow biopsies (BMBs) with better blood-based testing would benefit patients and researchers. Many people refuse to have BMBs or don’t have them regularly as they are so painful, but it’s currently the only way to monitor progression,” Gibson said.
Grants pave way for new discoveries
As part of the current research and grants program, non-executive director, Dr Laura Issa, said two grants were recently awarded: One to the Australian Centre for Blood Diseases at Monash University, and the other to the University of Western Australia.
“As a board earlier this year, we recognised to build that groundswell around our mission, we really needed to get proof of principle - to get some rungs on the board with respect to demonstrating our mission for making MPN research happen.”
In that vein, the foundation decided to fund some research. This was done to enable teams within the Australian research environment to take a risk on starting some research projects in this area.
“We initiated a program for engaging with scientists and clinician researchers across Australia in centres of research excellence for blood research,” she said, explaining the foundation put out a request for proposal.
“We received a lot of expressions of interest and research proposals from various groups across Australia and we selected a couple to fund in this initial first seeding round.”
Issa said both projects underway at Monash and the University of Western Australia look promising.
Dr Issa said Dr Kevin Gillinder from The Australian Centre for Blood Diseases, Monash University, is investigating the role of JAK2 gene mutations in causing blood cancer, while Dr Belinda Guo, from The University of Western Australia will investigate how genes cause fibrotic changes in the bone marrow, with a view to develop a non-invasive, blood-based test to identify who will progress to cancer.
“This will have a significant impact on advancing our understanding of rare blood cancers and that would make a huge difference to patients, treatment, progression and that would then enable a continuous cycle of innovation into the future.”
The grants were made possible through the support of employees of the Commonwealth Bank Group Property and Security whose fundraising efforts have supported Ruby Red since its inception.