Cairns resident Nicola Baker has achieved international recognition for her tireless work raising awareness about a rare and potentially deadly disease that nearly claimed her life. The founder of Moyamoya Australia received honours at the prestigious Rare Disease Awards in Dublin, marking a significant milestone for Australian health advocacy.
From Personal Battle to Global Recognition
Nicola Baker's journey with Moyamoya disease began in 2015 when she experienced a sudden brain bleed that revealed she had the rare cerebrovascular condition. Moyamoya disease causes the arteries in the brain to narrow and become blocked, leading to reduced blood flow and potentially fatal strokes.
After her diagnosis, Baker discovered how little information and support existed for Australians facing this condition. "When I was diagnosed, there was virtually nothing available in Australia for Moyamoya patients," Baker explained. "I had to navigate this frightening diagnosis largely on my own, and I knew others shouldn't have to face the same isolation."
This realization prompted her to establish Moyamoya Australia in 2019, creating the country's first dedicated support organization for patients and families affected by the disease. The foundation provides crucial resources, connects patients with specialists, and raises awareness among medical professionals.
International Honour for Australian Advocacy
Baker's remarkable work caught the attention of the global rare disease community, leading to her nomination for the International Rare Disease Awards. The ceremony took place in Dublin, Ireland, where she received recognition in the advocacy category for her outstanding contributions.
The awards celebrate individuals and organizations making significant impacts in rare disease research, support, and awareness worldwide. Baker's achievement marks one of the few times an Australian advocate has been honoured at this prestigious international event.
"To be recognized alongside so many incredible advocates from around the world is both humbling and validating," Baker said following the ceremony. "This isn't just about me - it's about every Australian living with Moyamoya disease and the medical professionals working to improve their care."
Transforming Rare Disease Support in Australia
Since establishing Moyamoya Australia, Baker has achieved remarkable milestones in improving support systems and medical understanding of the condition. Her foundation has connected patients across the country, developed educational resources for healthcare providers, and worked to establish specialized treatment protocols within the Australian medical system.
The organization has particularly focused on helping patients access life-saving surgical treatments that can restore blood flow to the brain and prevent future strokes. These procedures, while complex, can significantly improve quality of life and long-term outcomes for Moyamoya patients.
Baker's advocacy has also extended to supporting research efforts and collaborating with international experts to bring the latest treatment advancements to Australia. Her work has helped position Australian healthcare providers at the forefront of Moyamoya management in the Southern Hemisphere.
Looking ahead, Baker plans to expand the foundation's reach and continue her advocacy work. "There's still so much to do in terms of awareness, research, and support," she stated. "This award gives us momentum to push forward with even greater initiatives to help the Moyamoya community in Australia and beyond."
The international recognition serves as both an achievement and a catalyst for further progress in rare disease advocacy, demonstrating how dedicated individuals can create meaningful change even when facing significant personal health challenges.
