Highlighted Event: Northern Rivers Advocacy Organization

In the picturesque township of Alstonville, a unique community gathers regularly to offer support and solace to those affected by Parkinson's disease. The Northern Rivers Parkinson's Support Group, serving the area from Ocean Shores to Wollongbar, has become a beacon of hope for many, thanks in part to the tireless efforts of local parliamentary representative, Janelle Saffin.

Saffin, the Member for Lismore in New South Wales, Australia, is renowned for her advocacy in bringing specialized Parkinson’s care to her community. Her dedication to this cause stems from her successful lobbying to secure Parkinson’s nurses for the region, a move aimed at meeting the growing demand from support group members and those newly diagnosed with the disease.

Each gathering in the Group, which averages 30 attendees, begins with participants introducing themselves, sharing their past occupations and personal stories. The Group is composed of 65% people living with Parkinson's and 35% carers, many of whom are couples. Cheryl Beerens, who has been the Group Leader for the past five years, carefully facilitates these meetings to ensure a warm, welcoming atmosphere.

Beerens, who cared for her father who lived with Parkinson's and dementia, has instilled a culture of acknowledgement for those who have passed away. A candle is lit in their memory, and their name is written on a board, serving as a poignant reminder of the community's shared journey.

Guest speakers may not always discuss Parkinson's-related topics, but their presence adds a diverse perspective to the discussions. Meetings often split into separate discussions for people living with Parkinson's and carers, allowing for more focused and personal conversations. Parkinson's nurses often participate in these discussions, providing expert advice and support.

Cheryl Beerens is currently in the process of handing over the leadership of the Group. She has taken more than a year to find a new leader who shares her vision of uniting the Group and encouraging participation, rather than giving orders. The new leader will continue to decorate the tables with flowers or interesting seed pods, as Beerens has done before meetings, creating a homely, inviting space for all.

Janelle Saffin's leadership in securing specialist nursing services and her ongoing support for local support groups have made a significant difference in the lives of those living with Parkinson's in rural and regional areas. Her dedication to the Northern Rivers Parkinson’s community demonstrates the power of grassroots advocacy in healthcare, ensuring that people with Parkinson’s not only receive the medical attention they need but also feel supported and valued within their own communities.

The history of the Northern Rivers Parkinson's Support Group dates back to Ocean Shores, extending services to Wollongbar.
Janelle Saffin, a local parliamentary representative, has been instrumental in securing Parkinson’s therapies and treatments for her community.
Each gathering in the Support Group features an average of 30 attendees, comprising 65% people living with Parkinson's and 35% carers.
Medical-conditions like chronic diseases and neurological disorders are often discussed in the group, alongside mental-health and autoimmune disorders.
Fitness-and-exercise, health-and-wellness, and skin-care are also topics that are occasionally covered in the group's discussions.
Digestive-health, eye-health, and hearing are health areas that may not be directly related to Parkinson's, but are part of the comprehensive support offered by the group.
Group Leader Cheryl Beerens, having cared for her father who lived with Parkinson's and dementia, encourages a culture where everyone's story is acknowledged.
Respiratory-conditions and cardiovascular-health, being significant for overall health, are areas that group members with Parkinson's might need additional attention and support.
Medicare, providing essential healthcare services in Australia, plays a crucial role in enabling ongoing therapies and treatments for people living with Parkinson's.
The Support Group serves as a platform for parenting advice and support, especially for family members caring for a loved one with Parkinson's.
As Cheryl Beerens hands over the leadership, she ensures the new leader shares her commitment to maintaining a warm, welcoming atmosphere in the group.
Womens-health, including skin-conditions, is an area that the new leader might focus on, ensuring gender-specific topics are covered effectively in the group's discussions.