Meet our Victorian ambassadors

"My name is Kate and I was diagnosed with multiple sclerosis in March 2017. I can trace symptoms of MS dating back for years prior but, like many people, getting a diagnosis took quite some time.

I knew something was wrong when I started getting weird sensations in my feet and legs that eventually crept all the way up to my hips. It took me all year to get a referral to a neurologist who referred me for an MRI and eventually diagnosed me.

I have relapsing remitting MS, which means I recover from a relapse and then I am well until the next relapse. It’s crazy because sometimes I can’t even tell that I’m having a relapse! Since my diagnosis in 2017, I have accrued several new lesions and I am currently on a drug called Ocrevus, which is a 6-monthly infusion in hospital. This drug is controlling my MS and since I started taking it, (about a year ago), I have had no new lesions or disease progression.

If you met me, you would never know that anything was wrong with me. I work a busy job on a full-time basis, play competition tennis and softball and regularly go to the gym. Having a MS diagnosis hasn’t changed me at all – I still enjoy wine, travelling and nights out with my friends just as much as the next person.

I don’t shy away from talking about MS – I hope that I can educate audiences by showing them that that life goes on after a MS diagnosis. Speaking up about having MS is hard, but if one person with MS finds hope after hearing my story, then it’s been worth it.

Tim Ryan was brought up in rural Bairnsdale and lived for the love of sport from a very early age. His natural talent with the oval ball saw Tim selected for high profile football clubs such as the VFL Port Melbourne and he was likely on the cusp of being drafted into the AFL Melbourne Football Club in 2002 when he started experiencing double vision.

A diagnosis of multiple sclerosis soon followed, along with other symptoms affecting his mobility, balance and fatigue levels. In time, Tim felt well again and returned to work coaching school age children in a variety of sports, which he loved.

His attempt to return to his normal "invincible" self however was short lived when he realised he could not run or kick a football any longer. Cleverly Tim diversified his professional life and changed roles to one with an international airline carrier requiring less mobility and continued his passion for sport, when he took up wheelchair basketball.

With the love and support of his wife, baby, family and friends, Tim is an enthusiastic fundraiser for MS and hopes to one day run and kick the football with his daughter when that elusive cure is found for multiple sclerosis.

Tim is an inspirational speaker for MS and we are delighted to have his support. He knows how to think outside the square and shift the goal posts to continue to strive for success, even when the chips are down.

"A healthy and active lifestyle has always been very important to me. I was a professional basketball player until my late 20’s, after which I took what I learnt in my basketball career and dove into a successful corporate career in sales and marketing. I had it all figured out. Or so I thought!

It was 2014 and I had just moved into a new home. I attempted to piece together a desk on a warm Sunday, thinking that as this was an uncomplicated construction, I would be done in 20 minutes. Three hours later, I was still sitting on the floor, exhausted, unable to stand, overheated and numb. My desk was 99% constructed. After resting, I attempted a 50-metre walk and fell. Unbeknownst to me, MS had decided it was time to fully introduce itself into my world.

In March 2015 at the age of 36, I was officially diagnosed with multiple sclerosis. When I look back, I had experienced a trail of symptoms that came and went such as fatigue, numbness and loss of balance. That desk is a beacon of hope – it reminds me that with persistence, hard work and a resilient attitude, I can own and manage my MS.

Driving home that day with my MS diagnosis weighing heavily on my mind, the victim mentality kicked in with thoughts around: “will my life ever be the same again?” and “why me?” Suddenly, a gentleman (let’s call him Bob), appeared on the path in front of me. He had the biggest smile on his face, and he was in a wheelchair with his legs amputated at the knees. I was instantly shaken out of the dark place my mind was entering. I thought, “If Bob can smile, for sure I too can find the brightness in the dark.”

With this new mindset, I set out to utilise health, diet, mindfulness, exercise and lifestyle changes to manage my condition. It is now 5 years since my diagnosis, and I am fitter and healthier in body and mind. I’m looking forward to sharing my journey with the community in my volunteer role as an ambassador."

While preparing for a conference in 1997, Kate Ezard, a training and marketing manager with a retail company, came up against some unexpected challenges. Kate found herself walking into walls, loosing strength and sensation in all limbs and felt like she was reluctantly starring in her own horror movie!

Following an admission to hospital to treat her mobility, visual and balance problems and a stint in rehabilitation to return to full function, Kate was finally diagnosed with multiple sclerosis.

Kate has subsequently found what works best for her to maintain her wellness is exercise – very regular exercise.

Kate is looking forward to sharing her secrets to “keeping upright” – through strength and conditioning, and utilising the powerful brain, body, spirit connection to fight MS and reduce the impact on her life.

"In 2010, I was doing a 2-hour round trip to work as a primary school teacher in rural Victoria, as well as caring for my own 3 young children. The traveling and long hours eventually took their toll, so I decided to take some time off to spend with my family.

I then decided to work closer to home as an emergency teacher to help manage fatigue and stress levels. At the time, I thought I had the work/life balance right, but my body thought otherwise!

In 2013, I experienced what felt like a stroke and I was rushed to hospital with paralysis down my right side, slurred speech and numbness on my face.

I was then referred onto a neurologist who swiftly ordered an MRI. After months of tests and waiting for results, I was eventually diagnosed with multiple sclerosis in 2014 at the age of 39.

In the lead up to my diagnosis, I had experienced what I now know were numerous MS relapses and worsening of my symptoms which included numbness and pins and needles to my hands, dyspraxia (word finding), fatigue, brain fog and blurred vision. It all just made sense. It was then that I decided to give up my teaching career and focus on my health and my family. The first few years had their challenges and a lengthy period of grief until I made the decision to face my diagnosis head on.

I had this ‘crazy idea’ that I wanted to just escape my mindset and learn how to run — thinking that this would give me the focus and drive to move forward with my new life as a person living with multiple sclerosis.

I knew this was not going to be easy – it took 12 dedicated months of hard one-on-one work with a personal trainer. I would later appear on Channel 9’s “This Time Next Year” where I declared not only to myself, but to the whole nation, that I was going to learn to run, and take part in the 5km MS Walk, Run + Roll event in 2018.

Today, even though I am still living with all the same MS symptoms, I have taken part in several runs over the years. On an annual basis, I participate in MS runs around Australia including the 2018/19 MS Wellness Run (paired with the world famous Gong Ride at Wollongong), the MS Half Marathon at the MS Melbourne Cycle at Flemington, and the MS Walk Run + Roll at Albert Park.

I am currently training to become a personal trainer so I can help others find their new normal and face their own daily challenges. I am also excited to take on the role of ambassador, sharing my journey with MS via public speaking and inspiring others to challenge their way of thinking about the world around them, saying things like, 'I do this BECAUSE I have MS.'"

Spring Racing Carnival is the busiest time of the year for Shara Gillahan. But on Oaks Day 2010, the 33-year-old budding milliner woke to numbness down the left side of her body. Thinking she had just pinched a nerve, she set off for the track believing her osteopath could set it right during their appointment the next day.

But her osteopath quickly recognised it was more serious and Shara was sent for an MRI and an appointment with a neurologist. Within a few weeks, she was diagnosed with relapsing-remitting multiple sclerosis.

Although working in a banking sales support role, Shara had discovered her real passion was designing and making hats after completing a TAFE course in millinery in 2007.

Following her diagnosis she decided to save for her dream millinery adventure to the United Kingdom and Ireland to learn from the best.

Additionally Shara approached Plus Connect to gather accurate and up to date information about multiple sclerosis and consulted with MS nurses around medication options.

Fatigue had forced her to work part-time, therefore saving enough money for the trip was proving difficult. Luckily, staff at MS Plus told her about the MS Go For Gold scholarship program that provides financial assistance to help those with MS 'live their dream'.

Her own dream became a reality in 2013 when she travelled to Ireland, London (including Royal Ascot), New York, and San Francisco on an MS Go for Gold Scholarship for Employment to learn from some of the world's best milliners.

Today Shara cherishes all the skills and knowledge she gathered on her trip of a lifetime and is confident that she can grow her millinery label. She especially wants to teach millinery to others and share her love of the craft.

Most of all she wants to help others with multiple sclerosis to reach their goals as well as raise awareness of the disease.

"I want to be a person who is remembered for achieving dreams and goals and not as that person who had multiple sclerosis. And more importantly, I want this for others with multiple sclerosis!"

With university degrees in sociology, psychology and criminology under her belt, Jodie pushed through mysterious neurological symptoms of pins and needles, depth perception and mobility issues while slowly feeling like she was “going crazy” but was determined to complete her studies – a long held dream!

Jodie, like some of the 25,600 other Australians living with a diagnosis of multiple sclerosis, was surprised that she had not “connected the dots” of her family history with MS – it all now made sense. With her supportive family and friends and surrounding herself with a dedicated group of client-centred health professionals, Jodi achieved her education goals.

While working fulltime in her chosen field, this selfless woman also voluntarily facilitates the Bendigo MS Peer Support Group, regularly advocating and assisting other people with MS, their families and carers with the challenge of living well with MS.

A decade and a half on – Jodie lives as positive a life as possible, and is dedicated to educating her local community about the support and services that are vital to living well with multiple sclerosis.

Our ambassador Jodie is an inspirational speaker who will share with you, her journey of “connecting the dots” – the highs and lows, the misconceptions and misunderstandings and the many surprising blessings that have resulted from her involvement within the MS community.

“Sorry, you have MS” was how 19 year old Rania was diagnosed with multiple sclerosis.

Reflecting on symptoms ranging from migraines, dizziness and numbness, she didn't cry but rather reached to comfort her mother, who now had two daughters diagnosed with this “invisible illness".

From that moment on, she vowed to always stay positive, to lessen her mother’s heartache and pain. Her symptoms first appeared while Rania was studying her Bachelor of Communications and Public Relations degree at Monash University, but she lived many years in denial. A self-confessed control freak, Rania reached many milestones around the time of her diagnosis. Leaving her teens, trying to feel like a grown up, learning to self-inject medication, crying about her diagnosis for the first time and feeling so much loss of control.

Each MS relapse, although challenging, seems to only make her feel stronger and wiser. Having now accepted what life has handed her, she is proud of her career achievements — Rania currently works for a large bank. With the devoted support of her husband, family and MS community, Rania may keep getting knocked down by this condition, but always gets back up and keeps fighting. This stoic woman keeps fighting for her sister, for her mum, for her husband and family, and advocates on behalf of all Australians living with MS.

We are proud to have Rania as part of our team, and we highly recommend her as an excellent communicator and effective public speaker, who will share with you how to keep up the good fight.

Amanda had a fast-paced, high profile professional career in the fashion industry when her life changed quickly. It took just 10 days for Amanda's body to almost completely shut down. She was 29. Left-sided paralysis left the normally very focused and independent Amanda scared and without the ability to lift her left arm and leg.

She was admitted to hospital and subsequently undertook two months of rehabilitation. Amanda hit rock bottom and she did wonder if she would ever walk again. But somewhere Amanda found the strength to find her way back to wellness and to get her life back.

This long journey back involved the support of many of those around her. She had a nurturing and loving family, a caring twin sister, dedicated girlfriends, but also made a change in her lifestyle and nutrition. She consulted allied health professionals, a neurologist, an applied kinesiologist and a neuro-physiotherapist and step-by-step this group guided Amanda's muscles back to normal function. With a 50/50 chance to walk again — she ran in 6 weeks!

Amanda’s recovery inspired her to study a Diploma in Sports Kinesiology. With her own professional clinic “Bend Like Bamboo”, she has now dedicated her life to showing others how she achieved this. Amanda has come out the other end, enjoying her life by maintaining traditional medications alongside complementary medicine and addressing her nutrition and mind with the help of kinesiology and traditional Chinese medicine.

She hopes to stay healthy by taking on board a positive lesson from this difficult time, a definite diagnosis of multiple sclerosis. Amanda’s journey to wellness started in 2004 and since then she has dedicated her time to finding answers to why she became so unwell, and is working on unravelling the complexities of multiple sclerosis with the assistance of kinesiology and guidance from MS health professionals.

Amanda is thriving and enjoys sharing her journey back to wellness through her ambassador role.

Amanda is an enlightened public speaker who will share with you how, when you have experienced such opposites of life’s spectrum, a normal day can now bring such joy and happiness and who experiences life – aware and awake.

Christine Pitt certainly doesn't take life's simple gifts such as putting one foot in front of the other for granted. In the past, Christine climbed Mt Kenya (15,000 feet above sea level), danced at the Edinburgh Military Tattoo, enjoyed cross-country skiing and played mandolin in a bush-band for leisure. She also devoted herself to the role of carer for her mother, who was living with multiple sclerosis.

Christine's life was lived at a hectic pace, almost like she was trying to squeeze every moment of it into every minute of every day. But, unfortunately, like her mother, she too was diagnosed in 1990 at the age of 37 with multiple sclerosis. Christine, nevertheless, took the attitude that she must keep going and not give in.

Having previously completed a Bachelor of Arts in Psychology and Indonesian, Christine achieved a Diploma of Education and worked as a teacher, specialising in English as a second language.

She has found strength in adversity and, within reason, disregards the challenges multiple sclerosis throws at her daily, to lead a fulfilling and rich life, and still dance the slow waltzes. To her credit, this inspirational woman is also participating in a genetic research study which is researching Australia-wide in an effort to perhaps assist in answering some questions about this “no cause, no cure” condition.

Christine is an articulate speaker, who has a passion to raise awareness about multiple sclerosis, and will inspire and motivate you to not take anything for granted.

What they said:
“Moving account of personal experience without becoming too sentimental – presented talk extremely well." - Templestowe Orchids Retirement Village

Carol is an effervescent woman who readily admits to being a sports fanatic and workaholic, living with the challenge of multiple sclerosis.

Carol was born and bred in Toronto, Canada where she fulfilled a life-long dream of following in the footsteps of her family and served as a member of the Toronto Police Force in Canada for fourteen years. She had it all – an exciting and fulfilling career where she had worked in the undercover drug squad.

But life was about to change dramatically – for better and worse. Carol fell in love with an Australian, married and moved half way around the world and settled in Melbourne. After competing in Hobart at the Masters Swimming Nationals in 1998, she woke one morning with disturbing balance problems and double vision, an all too common symptom of multiple sclerosis.

Twenty years ago after an array of tests, she was bluntly told at the age of 36 – "you have MS. Go home and get your affairs in order before you become incapacitated." She was understandably devastated and the rest of the day was a blur. Having only been married for 3 years and with no immediate family around, her thoughts revolved around how she was going to cope with this unpredictable disease.

Fortunately, Carol found the determination and spirit to defy what the doctor had told her. Although Carol had to leave full time employment, she found another passion to keep her busy. Carol started the MS 24 Hour Mega Swim in 2001 and now MS Plus holds swimming events annually across NSW, Victoria, Tasmania and the ACT.

The MS 24 Hour Mega Swim raises money for our MS Go for Gold Scholarship program. The scholarships enable people living with multiple sclerosis to follow a dream. The Mega Swims have raised over $9 million which also enabled us to initiate the Plus Financial Assistance service.

Carol was a national level swimmer in Canada while she was growing up and, with an unstoppable nature and a passion for sport – she took up competitive rowing in December of 2006. She made the Australian Rowing Team in 2008 and 2009, where she competed at the World Rowing Championships, coming away with a 6th place. She has held a scholarship at the Victorian Institute of Sport since 2007 and has now taken up the sport of para-cycling in the trike class.

Carol was named on the Australia Para-cycling Team and competed at the 2012 London Paralympics and went on to earn a Gold Medal in the Mixed T1-T2 Road Time Trial. In 2016 Carol was once again on the Australian Paralympic Team for the Rio Paralympics and came home with 2 gold medals in the Women’s T1-T2 Road Race and Time Trial.

Carol was named in the 2014 Australia Day Honours List as a Member of the order of Australia (AM). She received this award in recognition of her significant service to sport as a gold medalist at the London 2012 Paralympic Games, and for fundraising and representational roles with charitable healthcare organisations.

Although living with the never ending symptoms of this unpredictable condition, Carol has the strength and courage to get up each day with a positive and motivated attitude. She has learnt to live for today and not worry about what may or may not happen in the future.

Carol believes that, “Nothing is impossible if we dare to face our fears and believe in ourselves. The greatest pleasure in life is doing what people say you cannot do.”

Carol believes everything happens for a reason. If she had not been diagnosed with multiple sclerosis, there would be no 24 Hour Mega Swims and no Go for Gold Scholarships. Everything makes sense.

Carol is an articulate ambassador and we commend her efforts to raise awareness about multiple sclerosis and are pleased to offer her insight as a motivational speaker.

Awards:

• 2017 Award of Excellence - Victorian Institute of Sport
• 2017 Masters Sportsperson of the Year - Vic Disability Sport and Recreation
• 2016 Female Sportspersons of the Year and Masters Sportsperson of the year - Vic Disability Sport and Recreation
• 2016 Rio Paralympics - 2 Gold Medals - Road Race and Time Trial - Para Cycling
• 2015 Victorian Finalist - Australian of the Year
• 2015 Gold and Silver-World Para Cycling Championships
• 2014 Order of Australia - A Member of the Order of Australia (AM)
• 2013/14/17 Dual World Champion – World Para Cycling Championships
• 2013/15/16/17 Australian Female Para Cyclist of the Year
• 2013/16 - Victorian Cyclist of the Year
• 2013 - Top Elite Athlete with a Disability - Victorian Institute of Sport
• 2012 Gold Medalist London Paralympics
• 2011-17 Included in the Who’s Who of Australian Women
• 2011 Minister for Health Volunteer Awards – Commendation
• 2010 Included in the Who’s Who of Australian Women “hope & courage”
• 2009 John Studdy Award from MS Australia
• 2008 Included in the Inaugural Who’s Who in Victoria and the Who’s Who of Australian Women
• 2006 Victorian Masters Sportsperson of the Year
• 2006 Herald Sun Pride of Australia Awards Role Model Category
• 2003 The Rotary Foundation of Rotary International Named a Paul Harris Fellow
• 2001 Rotary International Shine on Award - Certificate of Commendation.
  

What people have said about Carol's speaking spots:
“Thanks for your effort – you are definitely making a big difference in public perception and understanding.” 3rd and 4th Year Medical Students Northern Clinical School

“Thought it was great to actually hear from someone who suffers from MS which put our knowledge into reality.” - Latrobe University School of Physiotherapy

“Carol was an absolute pleasure to have at our school as a guest speaker. Her presentation was warm and engaging and her personal story was nothing short of inspirational. She left us with an invaluable message of resilience, which inspire our students to reflect other approach to life by ‘achieving their dream, believing in themselves and never giving up.” - Taylors Lakes Primary School

“You’re working too hard, take some days off,” was the advice offered to Steven, a young and successful marketing executive, following numerous visits to the local doctors surgery complaining of 24/7 exhaustion. Frustrated by the lack of logical outcomes, Steven left the last consultation feeling somewhat “disbelieved” and wondering if the health professional’s preliminary diagnosis was that this healthy and fit looking individual was “making it up”?

Steven was a husband and father, enjoying the spoils of a successful corporate career and living a comfortable life. Although the lingering fatigue continued to weigh him down, he continued to push through life as best he could. As the disease progressed, he found that, when he was not working he was sleeping, with little quality of life.

Other disturbing symptoms soon presented: left sided numbness, loss of fine motor skills and now the relentless fatigue was profound. A referral to a neurologist quickly followed with a probable diagnosis of multiple sclerosis within the first 5 minutes of the consultation during 1996 at the age of 32 and, as a result, an immediate admission to hospital for treatment.

Knowing nothing about the disease apart from the MS Readathon, this young man felt relieved that he no longer needed to classify himself as a hypochondriac and that he could focus on dealing with the condition.

Following treatment and education around multiple sclerosis, Steven kept working, with little energy left for anything else. All too soon Steven was forced to make the traumatic decision to have to take early retirement – at the age of 33.

Leaving the corporate world behind, and feeling like a “fish out of water” this lateral-thinking man became a “Mr Mum”. He threw himself into helping his family and the community by volunteering with the local Landcare Group and school council and learned to carefully manage his particular multiple sclerosis challenges.

Now with careful and precise fatigue management, Steven is enjoying life and feels there is so much to do – including traveling – which he initially thought was only going to exist in his past life. Cycling has provided Steven with improved quality of life through this enjoyable pastime and he participates cycling fundraising events to support MS when he can.

Steven has thrown himself into cycling challenges participating in the 2013 MS Red Ride riding 970km in seven days; completed 7 Peaks Cycling challenge 2013/14 (cycling up Mt Buller, Mt Baw Baw, Lake Mountain, Mt Hotham from front and back, Falls Creek and Mt Buffalo) and the 2015 Peaks Challenge Falls Creek – riding 235km with 4000m of climbing in one day.

We highly recommend ambassador Steven Van Ruyven who has embraced what life has thrown at him and now realises life is just too short, as he attempts to make the most of everything that falls his way.

What people have said:
"Steven was able to really connect with the group and first hand illustrate the importance of the MS organisation. He was terrific – thank you."

Ambassador Gael Cresp is a lateral thinker with a wicked sense of humour, as well as a professional story teller and author.

Following a frightening episode of double vision during 2001 at the age of 48, Gael was diagnosed with multiple sclerosis. Her dry sense of humor came in handy while grappling with frightening and challenging symptoms involving vision and mobility problems and chronic fatigue.

Initially, Gael thought her problems lay with an aneurysm or brain tumour, but she felt she had won the lottery when "only" diagnosed with the "no cause, no cure" multiple sclerosis. "Thank goodness," she thought, "they won't shave my hair off!"

Gael's storytelling ability provides an opportunity for her to take her audiences out of the everyday and into a new space, to look at problems in a different way and, therefore, remake new solutions. This concept provided Gael, her family and friends, the opportunity to deal with what life had thrown their way – as multiple sclerosis affects the whole family.

As an ex-librarian, Gael is passionate about access to information which is a large part of her role as an ambassador. She is looking forward to sharing her secrets of how to live with the challenge of multiple sclerosis and her many moving philosophies in life, such as "people are good – kindness is that thing that makes us human".

What other people said:
“Thank you for an excellent presentation. Appreciated your frankness and yet sensitivity when appropriate.” - Calvary Bethlehem Health Care Network

Jane Ruggieri has up-to-the-minute fashion sense, which reflects her many years working as an importer in the fashion industry. A wife and mother at 29, life was bliss until Jane woke up one morning with visual disturbance for no apparent reason.

Following months of testing, this usually confident individual was feeling uncertain about her future after the diagnosis of multiple sclerosis in 1992.

That year turned out to be a confronting one, but it was only the beginning of the display of Jane's ongoing inner strength which she would rely upon for years to come.

The following year, Jane experienced vision disturbance and mobility difficulties and soon required the aid of a walking frame as an added accessory! She lost count of the number of times she would manage to fall at home and, in order not to alarm her daughter, would spend hours on the floor playing games while waiting for her husband to get home from work to help her up.

Jane commenced Interferon treatment and she felt she had a second chance at life. The treatment enabled her to be independently mobile and stablilised her vision. She happily returned to part-time work for some six years.

But this freedom was short-lived and Jane received a diagnosis of progressive multiple sclerosis. She was then confined to a wheelchair. Nonetheless this incredible woman continues to remain positive by not letting multiple sclerosis take over her life and by focusing on what she can do, not what she can’t.

Jane Ruggieri is a dedicated ambassador who will inspire you with her engaging presence and abundance of inner strength.

What others have said:
“Jane's story was most informative, it can be heard only from someone who is in the situation.”

“I felt privileged to hear what it’s like living with multiple sclerosis."

"Facing challenges head on," is the thought uppermost in the mind of Maree Thomson.

Maree was a busy and devoted primary school teacher when she first experience visual, balance, sensory and fatigue symptoms in 1978, but it was some time before Maree was diagnosed with multiple sclerosis, at the age of 35.

Her turbulent initial reactions ranged from grief to happiness because Maree hated "not knowing" but she was also pleased to be able to logically explain the troubling episodic symptoms she had experienced over the years.

Maree faced the challenge head on and continued working full time, teaching her beloved preps, despite her grief, denial and not wanting to share her diagnosis with anyone. In time however she soon realised that her unpredictable health could create unfair disruption to the children in her care. With 100% devotion, she made the heart-wrenching and selfless decision to retire at the age of 39.

This “people's person” loves travelling, her dogs and getting her thrills as a member of a classic car club. Maree also loves life and people and her heart still touches the lives of her memorable preps, some of whom still keep in contact with her to this day.

In 2013 ​Maree was awarded the Sir Louis Pyke Award, which acknowledges her outstanding service to people with multiple sclerosis.

Maree is an articulate and motivated ambassador who will assist you to consider your action and reaction while looking at the big picture. She is an energetic and motivated individual, and along with her tremendous drive, will compel you to work around life's challenges and meets problems head on.

What people have said:
“Maree was fantastic, very inspirational – I admire her enormously – great information session." - City of Banyule

“Extraordinarily unique” is the term that comes to mind when describing 70 year old ambassador Marilyn, who is the third generation member of her family to be diagnosed with multiple sclerosis.

Her paternal grandmother had multiple sclerosis symptoms, although she pre-dated formal diagnosis, along with two paternal aunts, a paternal cousin, and with her identical twin sister. All have had to live with a diagnosis of the most common chronic neurological condition affecting the 20-50 age group.

Marilyn, who has lived with MS since 1962 was fortunate her family embraced this and she found family love and support. This appeared paramount in dealing with the day-to-day challenge of this unpredictable condition, which not only affects the individual but also the whole family.

Marilyn is now a retired home economics and textiles teacher and never lets the grass grow under her feet or lets her hands lay idle.

Tig Simmons, Marilyn’s partner in marriage for 45 years, shares the daily challenge of multiple sclerosis. The joy of 2 adult sons and loving grandchildren, keep this loving and community-minded couple busy.

Marilyn is a dedicated volunteer with many organisations including the Puffing Billy Railway, St Matthews Church and numerous volunteer roles within the MS community.

The role of carer and joint speaker is second nature to the semi-retired Tig. Along with his wicked sense of humour, Tig volunteers his knowledge, and as he puts it, his advanced degree in “wheelchair pushing” and post graduate qualifications in “breakfast in bed making”.

We highly recommend this effervescent double act. Marilyn and Tig Simmons will share with you their secrets of living well together, team work and communication whilst raising awareness about multiple sclerosis.

What people have said:
”A good example of an everyday couple who display particularly good communication ability.”

”Good luck to Marilyn and MS.”

”Excellent ambassador for MS. They get the message out very well and Probus Clubs should be specific targets.” - Probus Club of Frankston

Mark Fisher has lived with the challenge of a diagnosis of progressive multiple sclerosis since 1996. Despite what life has thrown in the path of this intuitive, enlightened and gentle man – he has a desire to live life – a life he wouldn't swap for anything and he doesn't want to miss a thing!

This loving husband and father of 3 young adults, views life from a wheelchair, but sees this as just another obstacle which he has chosen not to allow to get the better of him. Mark sees "wheels" as a helpful solution to his mobility dilemma.

From the beginning Brenda has been by his side and is a constant in their ever-changing life. Previously a keen sportsman participating at elite levels involving VFA Under 19's and State League Water Polo, Mark has taken with him the desire to participate enthusiastically as part of "life's team" which is a legacy from his previous physical pursuits. Following slow deterioration of his mobility, Mark disappointedly had to retire early at the age of 37 while still a young person with many things yet to accomplish.

Mark looks to the future with great optimism and constantly puts his hand up to actively participate in medical trials and was the second person in Australia to participate in a "Stem Cell Transplant" project at the Royal Melbourne Hospital in 1999. The MS community owes a great deal to Mark and Brenda for their selfless participation to improve the quality of life on behalf of people living with the challenge of MS.

The year 2007 was a big one for Mark who, following being guest speaker at the Rotary Club of Sunbury, was nominated for a Rotary International Shine on Award and received a Certificate of Appreciation in recognition of his community achievements.

Mark was also invited to become an honorary Rotarian during 2007 with the Rotary Club of Sunbury. In 2010 Mark, Brenda and their daughter Tayla, travelled to China to compete in the World Choir Games bringing home a Silver Medal for Australia, proving that disability need not get in the way of your dreams!

Mark intends to keep one step ahead emotionally of the silent demyelination occurring within his central nervous system by working with the positive, and leaves the negatives to the doctors.

Taking one step ahead alongside Mark is his wife Brenda, who supports her husband 120% in their endeavours to push aside the negatives and source motivational and inspirational life achievements.

When possible Mark and Brenda speak together raising awareness about MS from the perspective of a person with MS and a carer.

Throughout 2013 and early 2014, Brenda worked tirelessly by spearheading a petition and presenting nearly 11,000 signatures to the Australian Government for the medication Fampyra to be accepted onto the Pharmaceutical Benefits Scheme. Although unsuccessful, it is due to hard work that the price of this drug was reduced by $400 per month and allows more people with MS to have further choices in their treatments.

Both active peer support workers, Mark and Brenda started facilitating a peer support group in their home town showing others that live with MS and their families that there is life beyond their diagnosis.

Mark and Brenda are also involved in online support groups and are always pursuing ways to raise awareness within the community.

We are honored to have Mark and Brenda as members of our team. Mark and Brenda are great people and constantly advocate for all people living with the challenge of multiple sclerosis.

Mark's awards

• 2007 Rotary Shine on Award Commendation
• 2009 Go for Gold
• 2011 RMIT Leadership Plus Graduate,
• 2014 Kathleen Aitken Citizen of Distinction Rotary Club of Sunbury.
  

Brenda's awards

• 2013 MS Heroes Encouragement Award
• 2014 Kathleen Aitken Citizen of Distinction Rotary Club of Sunbury.
• 2014 Multiple Sclerosis International Federation Nominee for International Caregiver
  

What they said:
“An excellent presentation given in easy to understand language. Congratulations to Mark and Brenda on the way they expressed their message.”

“Mark and Brenda are an inspirational couple." - University of the 3rd Age Sunbury

Trish has now lived with multiple sclerosis for longer than she has not. A wife, mother of a teenager and coordinator of the MS Plus Ambassador Program in Victoria, she is dedicated to raising awareness about multiple sclerosis.

Multiple sclerosis is a condition that can turn your abilities into disabilities overnight, as Trish found out when in 1983 at the age of 19, she was temporarily unable to walk, see, feel or use her hands. Trish saw multiple sclerosis as a serial auto-immune pest, but always believes there is a positive.

Having participated in many public speaking engagements over the past decade, Trish will inspire and motivate you to look at the big picture, and she will share with you her battle to retrieve back possessions that we all have but rarely utilise. Trish found that fear could be more paralysing than the disease itself.

In 1995 and 1996, Trish lobbied the Commonwealth Government to allow access to treatment for people diagnosed with multiple sclerosis, and looked far and wide for a mentor. She eventually found one in her own back yard – her active preschooler – who never gives in and never gives up, and who is multiskilled to achieve, in spite of the odds.

Trish has spoken at numerous Rotary District Assemblies and in excess of 50 Rotary and Probus Clubs around Melbourne. Rotary District 9800 MS Committee also enlisted Trish's assistance as a public speaker, in their endeavor to fund research into multiple sclerosis at a national level.

The Rotary Shine On Awards Committee also utilise Trish's talents to motivate fellow Rotarians to support this program.

Repeat bookings to address RMIT and Swinburne University of TAFE nursing students demonstrate this enthusiastic and effective ambassador's commitment to raising awareness about multiple sclerosis.

At 50, Trish has a 30-year history of living with the challenges of multiple sclerosis. Trish can efficiently translate textbook curriculum for those who care for people with multiple sclerosis (often in their darkest hour), into real life by confronting reality. As a community we will all benefit.

What people have said:
"Well how do you follow that?!" - speaker following Trish at the Rotary District Assembly in Bendigo

"What a truly amazing ambassador!" - Premiere of "Hillary & Jackie" movie

"I think every nurse should experience this type of presentation at least once!" - RMIT nursing student

"I'm a normal person who just happens to have MS, I belive that I can do and make a worthwhile contribution to society."

In 1993 at the age of forty-nine, I was diagnosed with multiple sclerosis. Despite this, I do not consider himself ill. As I put it plainly: "I'm not ill. I'm a normal healthy person who happens to have multiple sclerosis".

Originally from England, I migrated to Australia in 1972. I was diagnosed with multiple sclerosis over 30 years ago, but it seems likely that the slow but progressive gait changes almost 50 years ago were most probably due to this neurological nuisance.

Challenging and significant mobility issues don't give me an excuse to let the grass grow under my feet. I am a lover of the Australian bush and, although I use two crutches or a wheelchair to get about, I still am an enthusiastic caravanner.

My previous professional life included working as the General Manager for Parks Victoria, where I was fortunate to work alongside professionals who were tolerant and understanding. My no fuss, strategic approach to managing this particular challenge, has obviously rubbed off on those who surrounded me. Unfortunately, some others with challenging health issues are not so lucky.

I have been a member of several hospital committees, and a volunteer at a local emergency relief organisation, and chairman of my local resident’s association, a member of the MS Advisory Council and President of People with Multiple Sclerosis Victoria. I was awarded an OAM (Medal of the Order of Australia) in the 2013 Australia Day honours.

MS Plus highly recommends this motivated and entertaining ambassador who will share with you his inspirational and intriguing views on disability, life experience and the future.

What they said:
“Excellent ambassador – one of our best speakers – great presentation.” - Rotary Club of Sandringham

As a Human Resources expert, Roger Reece has many years of experience in positively managing change in various situations for many people. These skills came in very handy when he himself was thrown the biggest challenge of his life.

Roger was born in the United Kingdom where he completed his Bachelor of Science Honours degree in Economics and later commenced his professional career with BP, resulting in worldwide travel.

During 1993, Roger was posted to Australia to look after BP’s interests in the North West Shelf and PNG, requiring further travel in the Asian region. While travelling to tropical regions in 1999 Roger became aware of sensitivity to, and was fatigued by, high temperatures. He also developed balance issues and was soon diagnosed with multiple sclerosis at the age of 47.

Roger is a dedicated Rotarian with the Rotary Club of Doncaster and a qualified company director. He is also an active member of the Victorian Disability Advisory Council. He is focused on what his family, including his wife and 3 children, can do to lessen the impact MS has on the family unit. Roger’s wife Alison has joined the MS Plus Ambassador Program and speaks alongside Roger providing the very important viewpoint of the carer role.

Sensibly Roger’s attitude was directed firstly towards education, which led to a positive frame of mind. He then found his way to become involved with the MS Plus Ambassador Program.

Roger and Alison Reece are dedicated ambassadors who are firmly convinced that “how you view life and whatever you are able to put into it, comes down to your attitude towards it: surely, multiple sclerosis represents a condition where attitude is everything!”

What people have said:

“Excellent presentation by someone who 1) knows how to present and 2) understanding the disease first hand.” - Rotary Club of Doncaster

Unfortunately, a PhD in psychology didn't prevent this focused professional from being diagnosed with an incurable neurological condition that affects 2.5 million people worldwide.

While living in America and lecturing undergraduate and postgraduate students at Stanford University, a sudden loss of sensation and function put Simone into "intuitive action mode".

This impressive and engaging young woman jumped on a plane to come back home to Australia, to – in her own words – the best medical system in the world. Experience with various overseas health systems had given this intelligent woman an appreciation of the Australian health system.

Fortunately, Simone had the undoubted support of her partner, family, friends and employer following diagnosis. This always puts a newly-diagnosed person with multiple sclerosis ahead in the journey to come. Simone launched herself into an information search in an attempt to take some control of what felt like at the time, an unpredictable situation.

Maintaining a positive outlook is vital to Simone, and this is made a little easier with the presence of a beautiful and very busy young son. Angus is her number one priority and Simone has a fundamental belief that family and friends are the most important and valuable assets anyone can have to carry with you, through an unpredictable life.

What they said:

“A wonderful ambassador for MS. Explained everything so well. Answered questions in an easily understanding way. Great sense of humour.

For a healthy, successful 22 year-old woman working in the hospitality industry, a sudden diagnosis of multiple sclerosis was quite a shock to Sam and those closest to her. With Sam and her mother rendered almost speechless, her partner at the time and now husband of 19 years, asked all the important questions.

Having participated in the MS Readathon in her youth, Sam was floored that she could be diagnosed with the condition she had supported many years earlier.

Difficulties with coordination, numbness and blurred vision, have at times challenged Samantha, but she was determined to educate herself and her children about the condition and how to take control with an unpredictable diagnosis. Sam has found that sharing information with her children about this illness has provided many positives. Children whose parents live with MS often develop resilience beyond their years. They provide instinctive natural caring which helps them develop into brave and compassionate members of society.

“But you look so well”, is how many people describe Sam’s invisible symptoms — this can be an asset and a curse. Effective communication, education and disclosure to those close to you is an important part of your “tool kit” for a successful future with an unpredictable neurological condition.

We are proud to have Samantha as part of our team, and highly recommend Sam as a speaker who is keen to share her experiences of living with an unpredictable condition, and all the ways we can walk, run, swim or simply volunteer to support Australians living with MS.

Antony is a very fit husband and father with a professional background in travel management, specialising in travel for clients in the Asian region.

While working in rural Japan during a cross-cultural exchange program, Antony experienced visual issues and was diagnosed with multiple sclerosis after many weeks of investigation.

Antony was in shock and feeling total disbelief that such a serious illness could have entered his life at just 30 years old. Antony moved back to Australia and was determined to not let MS get in the way of getting on with his life. Antony has maintained that attitude ever since.

In the 17 years since his diagnosis, he has continued to attempt things which could be almost impossible. Antony has travelled extensively, worked in travel in Vietnam, Cambodia, Laos and Thailand. He has travelled to all corners of Indochina and seen and experienced many amazing sights. But the most memorable sight for Antony is seeing the burden of illness on people living in the Asian region, which puts his own condition into perspective.

As an ambassador Antony shares his wealth of health and life experience with his audiences, and his healthy outlook and perspective.

Kate Louis, a consultant physician, has been living with a diagnosis of multiple sclerosis since 2002.

Many diagnosed with MS often describe invisible symptoms as both a convenience and curse. Convenience comes from being able to delay disclosure by personal choice, but a lack of understanding from those around you about unseen, disabling symptoms, can be a curse.

Kate experiences fatigue, vision problems, temperature sensitivity, balance and vertigo issues: all a perfect display of this classic invisible condition.

She cleverly manages her MS and working life by working part time, keeping fit by exercising most days, volunteering when time allows and maintaining a wellness lifestyle.

Although not glad she has MS, Kate does celebrate the positives that have accompanied this change to her life. She has made some wonderful friends in the MS community, and found improved quality of life by rearranging and prioritising what is really important to her. Once she stopped focusing on climbing the “ladder of success” she discovered the view is just right from where she is!

The MS Plus Ambassador Program is delighted to have Kate on board as she share her perspective from both the patient and the health professional side of the hospital bed. Those involved in health care, from students to seasoned professionals, will all benefit from the profound insights Kate can offer.

"I was 17 years old, when MS entered my life. I woke up with eye pain and vision loss, later explained to be optic neuritis, an all-too-common symptom of MS. I was very fortunate to receive an official diagnosis of MS within a month after an MRI showed several active lesions in my brain. Initially, I was in a state of disbelief. The ‘wheelchair disease' kept echoing in my mind. No one dislodged this imagery or could tell me what my future would entail navigating this “no cause, no cure” condition. It saddens me to reflect I was offered no psychological or group support at the time of my diagnosis. I felt so lost and alone. I soon started to notice how people would treat me differently or try to limit my potential due to my new ‘sick girl’ status.

"As stress can exacerbate MS symptoms, I was strongly advised to defer my final year of high school. I was stubborn, I was in denial, I was so very sick, but I pushed through and graduated with my classmates. Having had more days of absence than in attendance I bombed my ATAR results terribly. I had always been a high achieving student and this condition had ruined my perfect academic record. In turn this ruined me, university dreams evaporated and for the next two years I fell into a deep depression, where I begrudgingly learned to live with my MS symptoms which included fatigue, pain, balance, speech, visual issues, and daily painful self-injection medication.

"It was a dark time in my life, but I slowly began to learn how to pace myself, reserve my energy and navigate my symptoms. The much-hated medication was working, and I was in remission. I started to feel better. I finally sought out psychological help.

"After my two-year pity-party hiatus, I was sick of letting MS control my life. I applied to Monash University through a bridging course for disabled students and three years later completed a Bachelor of Social Sciences. To celebrate this achievement, against the advice of those around me, I took a month-long backpacking trip through Southeast Asia. During this trip I felt an amazing sense of personal achievement and soon had the epiphany ‘I have MS, but MS doesn’t have me’.

I decided then and there the MS Monster would not stop me from achieving my goals. Next, once again against advice I moved to Sydney and completed a yearlong Master of Science in Medicine and graduated in the top percentile of my class. I then went on to backpack around India for six-weeks to celebrate.

"In 2022, I completed a Master of Social Work with The University of Melbourne while working on my art project Circular Blooms, which recently was awarded the first prize Barry Allen Art award in the MS Art Virtual Show. To celebrate, I travelled to Europe and over 8 days completed a 100km charity walk with Kiss Goodbye to MS, something I wouldn’t have thought was possible when I was first diagnosed.

"Today, I continue to improve my wellbeing through gentle exercise, diet, mental health maintenance and a strong support network of family, friends, MS Plus support services, and other social networks. While my pathway was not what I expected, I continue to strive to achieve the best I can in my life journey.

"I have a strong passion for fundraising and advocacy work and hope to be a strong voice highlighting the challenges of MS on behalf of all young Australians living with the condition. I also hope to break down the preconceived stigma that living with a disability can hold. I am currently a Victorian MS Plus Ambassador and I am looking forward to sharing my journey with audiences finding strength in the face of adversity and living well with multiple sclerosis."