Living with Parkinson’s disease or dementia can be a challenging journey, not just for the individuals diagnosed but also for their families and caregivers. However, a ray of hope shines through as a new global initiative is set to revolutionize the way we approach these conditions. This groundbreaking move aims to fast-track the development of treatments for Parkinson’s and dementia with Lewy bodies, offering a beacon of hope for those affected by these incurable diseases.

Parkinson’s disease is a progressive neurological disorder that affects movement, muscle control, and balance. As the condition advances, cognitive decline often sets in, leading to dementia. Dementia with Lewy bodies is a specific type of dementia that causes a decline in thinking, reasoning, and independent function. In Australia, dementia is the second leading cause of death, underscoring the urgent need for effective treatments.


The inspiring story of Will Boag, a 77-year-old Sydney resident diagnosed with Parkinson’s 14 years ago, serves as a testament to the resilience and determination of those living with the condition. Despite the challenges, Mr. Boag and his wife Corrie have undertaken several 800km walks around the world, maintaining an impressive average of 22km per day on their walking trips. Through his efforts, Mr. Boag has raised over $35,000 for the Shake It Up Australia Foundation, which collaborates with The Michael J. Fox Foundation to fund Parkinson’s research.


Mr. Boag’s experience is a powerful reminder that a diagnosis does not signify the end of life’s journey. Instead, it can be the start of a new chapter filled with accomplishments and meaningful contributions. His message is clear: 'Life doesn’t end with a Parkinson’s diagnosis. Life can be quite fruitful.'


In a united effort to combat these conditions, a coalition of non-profit organizations has formed to prioritize patients' voices and bring together leading experts from around the world. This alliance, recently announced in the Journal of Parkinson’s Disease, is dedicated to fast-tracking new treatments that could potentially stop, slow, or prevent the progression of Parkinson’s and dementia with Lewy bodies.

The coalition’s strategy includes addressing challenges in developing new treatments, such as the need for more efficient clinical trial processes. A significant goal is to establish a standardized biological staging system to monitor disease progression, which could lead to early intervention opportunities. Currently, spinal tap CSF fluid analysis is used to monitor the diseases, but the coalition aims to develop a simpler blood test for diagnosis and monitoring.

A proposed biological staging system for neuronal alpha-synuclein disease has been introduced by the coalition, which could lead to more accurate comparisons of research findings and expedite the development of drugs to treat these conditions. Shake It Up CEO Vicki Miller emphasizes the importance of collaboration, stating that no single individual or organization can overcome the challenges alone. By joining forces with global leaders, Australia’s voice is added to this critical work, accelerating the path to better treatments.


The coalition has garnered support from various organizations, including the Alzheimer’s Association, American Parkinson Disease Association, Cure Parkinson’s New Zealand, CurePSP, Mission MSA, Parkinson’s Europe, and the Parkinson’s Foundation. This collective effort is a testament to the power of collaboration in the face of daunting challenges.

The financial burden of Parkinson’s and dementia is significant, with individuals facing high out-of-pocket costs. In Australia, Parkinson’s patients are estimated to spend over $190,000, while dementia patients incur costs of $54,745 in the first year following diagnosis, with an additional $16,990 each year thereafter.

As we witness this new move to fast-track treatment for Parkinson’s and dementia with Lewy bodies, it’s essential to remain hopeful and proactive. If you or a loved one is living with these conditions, stay informed about the latest developments and consider participating in clinical trials if possible. Your involvement could contribute to the breakthroughs that will change the future of Parkinson’s and dementia care.


We at the Seniors Discount Club are committed to keeping you updated on these advancements. Share your thoughts and experiences with us in the comments below. Have you or a loved one been affected by Parkinson’s or dementia? How do you cope with the challenges, and what does this new initiative mean to you? Your stories and insights are valuable to our community, and together, we can support each other through these journeys.