Yesterday, I attended this inaugural symposium. Murdoch Children’s Research Institute (MCRI) is Australia’s largest child health research centre and their work is broken up into five specialist areas (or themes):
1. Clinical Sciences
2. Genetics
3. Infection, Immunity and Global Health
4. Population Health
5. Stem Cell Biology
The day was filled with insightful presentations from Theme Directors. Examples were given that showed us the impact of research to solve the biggest health issues for children around the world. Some examples and highlights for me (and there were many) include:
- Professor Enzo Porrello (Theme Director of Stem Cell Biology) work using stem cell lines to create beating hearts and kidneys in the lab.
- The Bruce LeFroy Centre (BLC) established in 2003 through the generosity of the LeFroy family. Bruce also known as “Chief Joy Officer” has a rare genetic condition (which took 35 years to diagnose). The BLC conducts research into genetic diseases that affect the nervous system and genetic testing. This work has enabled many patients and families now being able to get a diagnosis in a few days and have better access to care.
- Hearing from patients and families and how this can drive the research.
- Discovery of the rotavirus by Professor Ruth Bishop and colleagues which led to a vaccine to prevent the first infection of rotavirus (a life-threatening disease in young children).
- The recent availability of “Genetic Carrier Screening” for Cystic Fibrosis, Spinal Muscular Atrophy and Fragile X syndrome under the Medicare scheme.
In my role, I consent patients with deadly and rare diseases and their families for research. They agree knowing it may not help them but it will help future generations.
Research is a tough slog- it is long and expensive but it is the only way that we will get answers. Every tiny break through and piece of information helps. Securing funding from the government for research is hugely competitive and it is assessed on “impact.” Researchers often don’t get the funding they need, and it is an added burden on them thinking about how to continually fund their important work.
As the Director of my newly founded company, yesterday had me thinking about Medical Sphere’s why. Many scientists are seemingly bad at promoting and communicating their work to “lay” yet, it is so important.
Additionally, as a nurse, I often wonder the best way to keep patients and families informed. In this rapidly evolving digital world, it is no surprise that online platforms can be a great way to do this.
Services that we offer at Medical Sphere are designed to support scientists and research centres to educate the community, encourage collaborative research and strengthen brand awareness for potential investors.
Author: Ms Emily Galea (Registered Nurse and Founding Director at Medical Sphere)
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