Our Story
From One Family’s Experience to a Mission of Hope
National MSA Research was born from a family’s experience with Multiple System Atrophy (MSA), a rare and progressive neurological condition that changes lives in ways few people can imagine.
Our journey began with one man, Adrian Klep, and a family searching for answers.
Today, his memory continues to inspire our commitment to raising awareness, supporting scientific research and working towards a future without MSA.
The Story That Started It All
Adrian Klep was a devoted husband, father and grandfather who valued family, friendship and community.
Throughout his life, Adrian contributed to his community through volunteering and service, including involvement with Rotary and church and community committees.
He was known for his generosity and willingness to help others.
But in the years leading up to his retirement, Adrian began experiencing health challenges that would eventually change his family’s lives.
In October 2022, after experiencing symptoms for several years, Adrian was diagnosed with Multiple System Atrophy.
For his family, the diagnosis came as a shock.
Like many Australians, they had never heard of MSA.
They began searching for information about the condition, available treatments and what the future might hold.
What they discovered was confronting.
MSA was a rare neurological condition with limited public awareness, no cure and significant challenges for people trying to find reliable information and appropriate support.
A Family Facing the Unknown
Living with MSA presented increasing challenges for Adrian and those closest to him.
The condition affected his independence and placed enormous emotional and practical demands on the family.
Alongside the difficulties of the illness itself came the frustration of learning how little was understood about MSA outside specialist medical and research communities.
For Adrian’s family, the experience highlighted an urgent need for greater public awareness, improved understanding and continued investment in scientific research.
On 9 September 2024, Adrian passed away at the age of 72.
His passing left an enormous void in the lives of his family and friends.
But it also strengthened a determination to help ensure that other families facing an MSA diagnosis would find greater awareness, understanding and hope.
Turning Grief Into Purpose
On 2 October 2024, National MSA Research was founded.
What began as a deeply personal response to Adrian’s experience became a commitment to the wider MSA community.
The founding directors recognised that MSA deserved greater attention, that patients and families needed better access to information, and that scientific research required stronger community support.
Rather than allowing Adrian’s story to end with his passing, they chose to build something that could make a difference.
National MSA Research was established to raise awareness of the condition and support the long-term search for more effective treatments and, ultimately, a cure.
The Beginning of National MSA Research
Establishing a charity requires commitment, determination and the willingness of people to contribute their time and resources.
From its earliest days, National MSA Research has been driven by volunteers and community support.
Fundraising initiatives, awareness activities, partnerships and the generosity of supporters have helped build the foundations of the organisation.
As a registered Australian charity, National MSA Research operates through Rare Neurological Disease Research Ltd.
Our mission remains focused on advancing the understanding of Multiple System Atrophy, encouraging research and increasing public awareness.
More Than One Family’s Story
Although National MSA Research began with Adrian’s experience, our mission extends far beyond one individual.
Across Australia and around the world, many people are living with MSA, caring for a loved one or remembering someone they have lost to the condition.
Every person has a different story.
Some families experience a long and uncertain journey towards diagnosis. Others face rapid changes in mobility, communication, independence and everyday life.
We recognise that behind every diagnosis are people whose lives, relationships and plans are profoundly affected.
These experiences continue to remind us why greater awareness, better information and scientific progress matter.
Our Mission Today
National MSA Research is committed to three connected goals.
Awareness
Increasing public understanding of Multiple System Atrophy and the challenges experienced by those living with the condition.
Alleviation
Helping people affected by MSA find reliable information and connections to appropriate support resources.
Advancement
Raising funds and encouraging appropriate opportunities for scientific research into improved diagnosis, more effective treatments and a cure.
We recognise that scientific progress takes time and that research outcomes cannot be guaranteed.
But we believe sustained effort, responsible research support and collaboration can contribute towards meaningful advances.
Keeping Adrian’s Legacy Alive
Adrian’s legacy is reflected not only in the family he loved and the community he served, but also in the mission that his experience helped inspire.
National MSA Research exists because his family wanted to turn an experience of loss into an opportunity to help others.
His story serves as a reminder of the human impact of Multiple System Atrophy and the importance of continuing the search for answers.
As our organisation grows, we remain committed to honouring the experiences of Adrian and every person affected by MSA.
A Future Worth Fighting For
We know that finding better treatments and ultimately a cure will require time, scientific expertise, collaboration and continued support.
We also know that greater awareness can begin today.
Every conversation about MSA, every volunteer contribution, every fundraising initiative and every act of generosity helps build a stronger community around this important cause.
Our story began with Adrian.
Our mission is for everyone affected by Multiple System Atrophy.
Be Part of Our Story
National MSA Research welcomes individuals, families, volunteers, researchers, businesses and community organisations who share our determination to make a difference.
Whether you choose to raise awareness, volunteer, fundraise, donate or collaborate, your support can help us continue working towards our goals.
Together, we can honour those we have lost, support those living with MSA and encourage progress for future generations.
Combatting MSA Together.
National MSA Research
Rare Neurological Disease Research Ltd
ABN: 55 681 229 032
Email: info@nationalmsaresearch.org.au
Website: www.nationalmsaresearch.org.au