Meet our NSW ambassadors

Mark Crockett is a husband, father and friend who previously led a busy life as a train driver.

During 2014, and at the age of 45, Mark was diagnosed with relapsing remitting multiple sclerosis, which affects over 25,000 Australians. Mark experienced symptoms ranging from headaches, vision disturbance and pins and needles and quickly commenced medication to delay the progression of the disease.

The journey to acceptance and learning to live well with a diagnosis of MS was rough in the beginning and Mark found himself at a very-very low ebb. He reached out to our Plus Connect line and as he says himself “Plus Connect provided all the information, direction and positives to keep going!”

Mark now keeps busy enjoying photography, fishing and bike riding and loves being outdoor. In 2017 Mark completed the 82kms of the MS Gong Ride which he credits with changing his life.

Mark now provides support as an ambassador and volunteers to raise the profile of multiple sclerosis in his local Newcastle community and to ensure that no one has to face MS alone.

“Living with the diagnosis of multiple sclerosis has been the biggest challenge of my life”, is how Nissa Lee describes her diagnosis of multiple sclerosis a decade ago.

Following a degree in Social Ecology, Nissa Lee enjoyed a career working with vulnerable youth on community garden projects and healthy eating initiatives in Mt Druitt, NSW. She also travelled the breadth of Australia.

Sudden neurological symptoms including difficulty walking, loss of balance, fatigue and pins and needles throughout her body led to a visit to the emergency department and a diagnosis of multiple sclerosis at the age of 24.

With the support of her family, friends and community, Nissa focused on providing her body with the nutrition, rest and the movement that it needed to recover.

Although her future felt quite bleak at times, Nissa continued her training in the martial art of Aikido, which assisted her to regain her strength and balance. Nissa was also awarded an MS Go For Gold Scholarship which enabled her to complete an Advanced Diploma in Naturopathy.

Nissa Lee now shares her story as an ambassador and volunteer with her local Newcastle community when she can and talks on how her diagnosis has made her stronger, wiser and a more compassionate person who is daring to hold onto hope.

Matt Roger is a husband and father of 2, who has been living with the challenge of multiple sclerosis for 15 years. Matt meets his neurological and mobility challenges head on with regular exercise and is determined to live with the challenge of MS with a positive outlook.

Matt also has a Bachelor of Business from the University of Technology in Sydney in his back pocket, and is a Chartered Accountant. He has 25 years of corporate experience in accounting with KPMG and internal auditing with Westpac.

Matt is a keen advocate for people with a disability and demonstrates this by facilitating an MS Peer Support Group for men and assisting with education campaigns. As an ambassador, Matt is inspirational with his determination and would welcome the opportunity to further educate the community on the challenge of living with multiple sclerosis.

In 2002 at 21 years of age, Rachael experienced an episode of unexplained blurry vision which was treated at the time and resolved. Feeling well, she put this medical episode out of her mind and carried on with her life.

In 2006, symptoms of pins and needles appeared, just prior to her wedding, but again Rachael was treated and recovered. Life moved on and Rachael and her husband welcomed 2 children.

It was 2014 before visual issues appeared again and this time Rachael was quickly referred to a neurologist and subsequently diagnosed with multiple sclerosis.

Rachael did not initially take the news well, but rather than wallow in self pity, she learned all she could about multiple sclerosis and helped those around her understand her diagnosis. As a result, Rachael's family, including her children, now have a deep understanding about how MS affects the entire family and how they can work together to manage MS.

Rachael continues to be a busy mum and works full time in the travel industry. She agrees she is fortunate to have a supportive employer who understands the challenges of her “invisible” symptoms of MS.

Rachael is keen to share her journey and hopes to help prevent others from what she felt was the profound sense of “alone-ness” of an MS diagnosis. Rachael is looking forward to sharing with you her learnings and educating the community so that “no one has to face MS alone”!

Ambassador Gai Helm was a very busy 50 year old mother of 2, who was studying full time and living on “adrenaline” when diagnosed with multiple sclerosis – the most common chronic neurological disease affecting young Australians.

Having lived with episodic and random experiences of dizziness and balance disturbance, weakness, tingling and numbness which at the time, were thought to be apparently “unrelated” symptoms that lasted for almost 5 years prior to her diagnosis. Gai experienced sudden increased weakness. This led to a medical consultation and resulting brain scans – checking for either a brain tumour or stroke. After an extended period of “wait and see” status, Gai was understandably feeling somewhat like a “hypochondriac”.

Fast forward another couple of years and more medical consultations, Gai was finally diagnosed with relapsing-remitting multiple sclerosis. This active and independent woman was understandably upset, but in time put it all in perspective, slowly adjusted and continued to complete her degree in Interior Architecture.

Gai hasn’t allowed MS to limit her activities very much, travelling overseas, enthusiastically throwing herself into community activities, volunteering on a regular basis by facilitating two MS Peer Support groups and is a dedicated ambassador, sharing with the community the reality of living with MS, an incurable chronic condition.

The MS Plus Ambassador Program highly recommends ambassador Gai Helm, who has seized the moment to design her life around the challenges thrown in her way.

Born and educated in Sydney, Vicki married in her early twenties and made her home in the Hunter Valley after she and her husband purchased the Bushrangers Bar & Brasserie at Largs, near Maitland, in partnership with her parents.

Vicki, 51, was diagnosed with multiple sclerosis in January 1991, 6 months after her only child (a son) was born. Whilst it took nearly 6 weeks to confirm the diagnosis, she did not experience obvious signs of the disease, and did not actually have a second "episode" for nearly 6 years.

In the 27 years that Vicki has been the hotelier and restaurateur at Largs, she has embedded herself in the local community and was actively involved in local government. Vicki was elected to Maitland City Council in 1999, was re-elected in 2004 as Deputy Mayor but stood down from Council in late 2008.

Vicki’s hotel has been the recipient of many awards and accolades over the years, winning the NSW Australian Hotels Association (AHA) Award for Outstanding Community Service and Achievement 5 times, the NSW Restaurant and Catering (RCIA) Award for Best Restaurant In A Pub 5 times, the Sydney Morning Herald 1 ‘Schooner’ for 2 years running and has been a finalist in the NSW Wine List Awards for the past three years. All these awards are testament to the love and passion that Vicki has for her business and the industry that she is in.

While Vicki's MS has started to noticeably deteriorate in recent years, through the support of her husband she continues to enjoy an extremely busy but balanced life of work and play. She has days of frustration, but just takes each day as it comes. MS sadly has become more visible to others, though Vicki just continues to take it in her stride. Vicki is also an MS Peer Support worker, which she thoroughly enjoys. Vicki loves helping others diagnosed with MS through a challenging and sometimes difficult phase.

Vicki thoroughly enjoys her role as an ambassador and has embraced the challenge of educating the wider community and raising the profile of people with MS.

Teaching is a job Karen Davies has always loved – throughout her career Karen has taught reading, drama, dance, English and history to students from Years 7 to 12. It is something she remains passionate about – educating people to the best of their abilities!

In 2001, however, Karen medically retired from full-time teaching after she was diagnosed with a brain tumour. Karen beat that tumour but 2 years later, she thought she may have another brain tumour. After many futile trips to her local doctor, an MRI (magnetic resonance image) was taken - the radio-oncologist who looked at the scans gave her the news that she may have multiple sclerosis. Her neurologist later confirmed her diagnosis – at the age of 48. Karen now had to learn to live with the challenge of multiple sclerosis.

Karen knew all about multiple sclerosis – her school had participated in the MS Readathon in the past – but the reality of living with multiple sclerosis was going to be entirely different. Karen decided that "although these things are sent to try us" her disease was not going to take over her life! Today, Karen teaches English as a second language to adults in a program run by the Anglican Churches of the Illawarra known as 'English For Life'. She also teachers Scripture at Bulli High School.

Karen, along with her trusty walking frame "Johnny", volunteers each year at the MS Sydney to the Gong Bike Ride, sitting at Wollongong Railway Station, directing a sea of lycra on to the platform where special trains transport cyclists back to Sydney. Karen has had the role of “Train Marshall” for more than 10 years!

To say thank you for the help she has personally received since her diagnosis, Karen has also become an ambassador to help raise awareness of multiple sclerosis in the Illawarra region and has spoken at the Wollongong MS 24 Hour Mega Swim since it started.

Karen knows there is always someone out there worse off than her and also plans to help MS raise funds to provide care and a brighter future for other people living with the disease. Karen is an engaging lady who can't help but try to educate someone new about multiple sclerosis!

"I feel so grateful that this condition has left my mobility, vision and coordination alone" is a thought prominent in the mind of this positive and proactive gentleman, following a diagnosis of multiple sclerosis during 2013.

Lew lived with an initial diagnosis of 'nerve neuralgia' which has now been recognised as episodes of multiple sclerosis for a decade.

Always looking for the positive, Lew feels he is very lucky as currently his symptoms have only been sensory in nature.

Having maintained a healthy lifestyle for the last 2 decades by attending the gym regularly and developing a love of walking, whereby he estimates he has covered over 16,000 kilometers in the last 8 years, on the streets of Illawarra.

Although living with daily pain, tingling and pins and needles this "people's person" takes life in his stride, and is an avid international traveler, bushwalker, camper, kayaker and fly-fishing enthusiast. Lew refuses to let multiple sclerosis spoil his enjoyment of life with his loving wife, children and grandchildren.

A long term passion of this talented gentleman is public speaking, which has led him to offer to donate his time as an ambassador to raise awareness about multiple sclerosis and educate the public about the impact of the condition on individuals and the community.

We highly recommend this experienced public speaker who will share with you that with guidance and assistance you can take life in your stride and push on working alongside an invisible challenge.

At 12 years of age Stephen Papadopoulos sat in a classroom listening to a presentation about the MS Readathon, not knowing that just a few years later, at 16, his first MS symptoms would appear.

When Stephen was diagnosed in 2001, at age 22, his response was "you have to get something in your life – MS is lucky to have me!"

After a year of dealing with his MS, medications and depression, Stephen decided it was time to get positive. He commenced working full-time for a film and television company and kick-started his social life again. Stephen now works part-time for MS Plus.

Stephen has remained positive – as hard as it can be living in pain 24/7, only getting 2-3 hours of sleep a night due to sharp stabbing pains in his body, constant pins and needles in his hands and feet and a burning sensation over his entire body. Stephen enjoys talking about and raising awareness of MS, as many people are unaware that the average age of diagnosis is 30. "It's not an old person's condition", he said. He has been an MS Readathon presenter since 2003, talking to school children who are appreciative of the opportunity to meet a young person with MS.

Stephen takes each day as it comes, always with a smile on his face, making the best out of every situation that gets thrown at him. Stephen says, "It's not the hand you get, it's how you play it.

Pins and needles down his left arm followed by a number of sensory symptoms was what prompted this high profile executive, husband and father of 3 to seek further advice.

He says his “heart sank" upon the diagnosis of multiple sclerosis, the most common chronic neurological condition for young Australians. Although he didn't know exactly what multiple sclerosis was, he just knew that whatever it is – he didn’t want it!

Receiving the life changing news on his 49th birthday was stunning in its timing and the first challenge was to get his head around what this diagnosis meant for him and his family, and he mentally went through the typical "what if?" and "why me?".

This young gentleman thrives on challenges but he knew this situation was a whole new ball game. Highly aware from the beginning this was going to test him, but with the support from his family and friends, who were there when he needed them, and didn't allow thoughts to cascade to doom and gloom.

Since then, Gordon has put in place good management strategies to reduce the impact on his professional life and busy lifestyle and realised that having a chronic condition with no known cause or cure can have advantages. Efficiently and deliberately he tried to not put important things off and in fact brought them forward. He seized the moment by travelling overseas on 3 occasions with his family and embraced opportunities to experience new and exciting things, like a rollercoaster ride with his children in the Paris Disney World – "I hated it and the kids loved it – but it was another memory that I will treasure".

He continues to work full time as the General Manager, Human Resources for Disability Services Australia.

We are delighted to have Gordon join our team to share information about multiple sclerosis and its effects and how to successfully traverse life challenges.

"I have always been an outdoors sort of person and, at first, I couldn’t work out why I always seemed to be tired and plagued by problems, despite an active, healthy lifestyle. I thought the numbness in my right hand must be a trapped nerve, headaches were diagnosed as optical migraines, fatigue must be due to the stress of a busy teaching job, heading up the maths department in a busy high school.

Frequent trips to the doctor shed no light until I started experiencing a drooping right foot while on a bush walking trip and I was, at last, referred to a neurologist. I was finally diagnosed with multiple sclerosis in June 2017 at the relatively late age of 53 and could then start really fighting back in earnest.

It took a long time though to get past the initial grief and depression that goes along with the diagnosis and to start working out how to ‘live well’ with my MS. Now, I consider myself very lucky as the disease hit me after my children had become independent and I had enjoyed a fulfilling career, unlike many who are diagnosed much earlier in life.

Having retired from teaching this year after some health setbacks, I still pursue an active lifestyle, having found that exercise is, ironically, one of the most helpful things I can do to keep the MS at bay. I cycle, swim and go to the gym regularly and am pursuing new challenges whenever I can. I was lucky enough last July to take part in Sailing Sclerosis’ Summer Expedition aboard the yacht ‘Oceans of Hope’ in Denmark. Being an active member of the crew rather than just a passenger made me really think about how I can adapt and work around the challenges particular to MS, and I was lucky enough to come away with a great new group of friends, all in the same boat!

I am looking forward to my role as an ambassador so I can help others enjoy the support that I have found so valuable."

"In 2001, I was diagnosed with multiple sclerosis and I felt like my world had fallen apart. Just the week prior I experienced dizziness and vision disturbance so I sought medical advice and was admitted to hospital.

I will always remember the moment of diagnosis, the feeling of shock, disbelief and ultimate fear. Who will want to marry me? Would I ever have children? These were just some of the repeated worrying thoughts, as I walked around in a daze

At the time, I was studying teaching at university and was concerned about my future, but in 2013 I commenced my first teaching role and today I am happily married to the love of my life and enjoying life with our beautiful children.

The MS rollercoaster has taken many different turns in my life with some situations hard to handle. I have been fortunate to find support through the services that MS Plus provides via their NDIS services.

I have found multiple sclerosis is such a game of the mind and body. I would not like to count the number of relapses I have lived with, bad days, tears and anger. MS “wins” some days but I win mostly.

I am currently a new volunteer ambassador sharing my MS journey, and educating and motivating my local community which always brings a smile to my face."

"Learning my limits physically and mentally has been my priority, and one of the most important things I have had to deal with, since my diagnosis of multiple sclerosis in 2007.

I had been experiencing unexplained numbness, balance and fatigue issues for some years, which eventually led to medical intervention and a referral to a neurologist. Leading a busy lifestyle in the education field my diagnosis came as a shock.

This turbulent time led me to then investigate what having MS meant for me. I sensibly chose to participate in a “Knowledge is Power” course with MS Plus, which provided me with the tools to understand my illness and how to deal with it.

I have learnt the importance of looking after myself, reducing stress, exercising regularly and learning how to say “no” to requests of my time, when I am not feeling well. In fact, I am still learning every day and determined to do the things I want to do in-spite of my diagnosis to prove to myself I can still follow my dreams.

Excitingly, I have taken on the role of a volunteer ambassador and look forward to sharing my MS journey with my local community, around learning my limits and sensibly exceeding, them when 'life doesn’t go to plan'."

"I am a scientist, an athlete and a mother. I am more than my MS.

I work full-time as an entomologist, am passionate about my health and fitness, and I have a growing family. My initial reaction to my diagnosis was that I was about to lose all of this – everything I had worked for.

I had my first child at the end of 2018 and at the beginning of 2019, I was diagnosed with relapsing-remitting multiple sclerosis. At the time, I didn’t really know what it was, only that it was serious. MS conjured a picture in my mind of a quick slide into disability and incapacity and so at the moment of my diagnosis, I was floored.

Prior to my diagnosis, I, like most people, had experienced suffering; I had overcome abuse and obesity and I had picked up my suffering and shouldered it to make myself stronger, using it as a springboard to working on myself and building the best version of me through the vulnerabilities and insecurities that my suffering exposed. I eventually became more than someone who was abused, someone who was obese, just as I will become – and already am – more than my MS diagnosis.

I’m keen to share my experience of living with multiple sclerosis whilst maintaining full-time employment, staying fit and healthy, contributing to and caring for my family and giving back to my community. I am new to life with MS but over the years I’ve learnt to be adaptable, resilient, and most of all, to take things in my stride with a positive attitude and outlook.

My energy is infectious and after a few minutes chatting with me I know you’ll feel inspired to become more than the suffering you have in your own life. I’ll show you how you can use that suffering as the springboard to being adaptable in the face of adversity and to becoming the best that you can be."

"My first multiple sclerosis symptoms date back to 2004 when I was 19 years old. I suddenly experienced loss of vision and I was frightened. I visited many doctors but never received a diagnosis. I later consulted an eye specialist and was told my symptoms were possibly linked to multiple sclerosis but advised it was too early for a definite diagnosis.

Ten years passed in which I experienced fatigue, tingling and altered sensations, all of which was put down to anxiety. In the spring of 2014, while feeling generally unwell, I consulted a neurologist and was immediately provided with a definite MS diagnosis. I cried. Not because I was upset, but with relief. Finally, I did not need to feel like a hypochondriac anymore. I thought I was going crazy and imagining things.

I’d done a lot of research and felt that I knew I had MS prior to my diagnosis. Once I had my diagnosis, I had to research treatment options that would delay disease progression and allow options to start a family. My husband and I were soon blessed with twins.

With the support of my family, I am now juggling full-time work in the banking industry with marriage and motherhood. I find I need to constantly and carefully budget my energy as MS fatigue is a constant in my life. I’m lucky to have great family and friends who provide help and support me in many different ways.

I try to keep up with regular exercise as being active always makes me feel better. It’s a constant juggling act with work, family, maintaining relationships and prioritising self-care, which is vital to keeping me feeling balanced and happy.

I’m looking forward to my role as an ambassador as I love being active in the community, supporting MS events and having my family and friends join me to show their support for MS."

"MS can be quite a mystery for a lot of people, but for me it is just always been a way of life.

At 13 years of age, I started to experience significant numbness. Following lots of different tests and an MRI, I was diagnosed with multiple sclerosis – the third youngest in the state with this condition at the time. Being 13, I of course felt I knew everything about the world and was convinced that the doctors had it all wrong.

I chose to keep my condition private — I didn’t want anyone judging me or treating me differently and, because my symptoms were invisible, it didn’t look like anything was wrong with me. Later, I studied at University, worked part-time and had a very busy social life. I was pushing my body to its limit and I was exhausted. Eventually, I learnt to plan my day and my energy, and to listen to my body.

A few years later, I met and married the man of my dreams and then I had to deal with my biggest struggle — my fear of motherhood and MS. I was eventually blessed with a baby girl. It was tough dealing with tiredness from being a mum plus MS fatigue but, with the support of my family and a network of friends, I got through it and I am now back at work part-time.

Some may feel pity for me having MS, but I feel extremely lucky – I grew up with MS, causing me to shift how I live my life and to change the way I do things in order to manage. My story with MS is continual and has been going for over two decades. I have had some real challenges and it has taken some time to finally be at a stage where I want to share my journey with others.

I’m really looking forward to my new role as an ambassador and sharing how I continue to keep moving forward with hope."