Sharon has always been the heart of her family, keeping everything running like clockwork. From managing daily chores to organising her sons' activities and after-school sports, her ability to stay on top of things has always been one of her greatest strengths. With a busy household and a husband who occasionally travels for work, Sharon’s organisational skills have been crucial. But what makes her ability to manage all of this truly remarkable is that she does it while living with motor neurone disease (also known as amyotrophic lateral sclerosis, ALS), a progressive neurodegenerative disease that affects the motor neurones in the brain and spinal cord.1
Despite the challenges motor neurone disease (MND) brings, Sharon continues to be the anchor of her family, using eye-gaze technology to help her communicate and maintain control over her daily routine. This technology, while invaluable, can be significantly slower than regular writing or typing, requiring more time and effort to convey her thoughts. However, Sharon’s determination is unwavering. She also uses it to prepare daily instructions for her support workers, ensuring they assist her with medications, dressing, eating, and other essential tasks.
MND is a disease that leads to the progressive loss of muscle control affecting mobility, general movement, speech, swallowing, and breathing, and ultimately resulting in respiratory failure.2Most people develop symptoms in their late 50s and 60s, and life expectancy after diagnosis is typically two to three years after symptoms appear.3
Sharon’s own journey with MND began in her mid-30s, when she first noticed a slight limp. After extensive tests, she was diagnosed with MND, a diagnosis that completely changed her life.
Sharon, a former physical education and health teacher, was passionate about staying active and playing sports, and she has channelled that energy into raising awareness about MND. She became an active fundraiser and a vocal advocate, hoping to shine a light on the condition and raise the urgency for research into better treatment options and potentially, one day, a cure.
One of Sharon's biggest priorities has been to keep her family’s life as normal as possible. She has two sons who were just toddlers when she was diagnosed, and they have grown up with her condition. Despite her gradually losing the ability to speak clearly, the boys have become adept at understanding her and communicating for her when needed. Sharon’s love for sports and staying active has remained a cornerstone of family life, with outings to sporting events and family games at home. Even during the COVID pandemic, she created fun activities, like an "Amazing Race" challenge for their birthday, to keep their spirits up.
Sharon always believed that she had the sporadic form of MND, which makes up 90% of cases, as when she was diagnosed there was no family history. However, a couple of years ago she made the decision to undergo genetic testing. She was particularly interested in knowing if her MND might be related to a known genetic mutation, such as the SOD1 gene mutation, which is one of the known causes of familial ALS. Familial ALS accounts for around 10% of all ALS cases with SOD1 making up to 20% of those, and the remaining 90% having no clear genetic cause.2,3
Sharon wanted to know whether her condition could be hereditary as there are some emerging treatments targeted specifically for particular genes and if she did have the familial version, she believed knowledge equals power when considering the implications for her family.
The results of the test showed that Sharon does not carry a known genetic mutation, which was a relief for her and her family. However, it leaves her with the question "Why me?" given that there are no clear genetic causes why someone develops sporadic MND. "MND is not an incurable disease; we just haven’t found the cure yet," Sharon said.
Sharon's experience with MND has not only changed her body but also how others perceive her. Although her mind remains as sharp as ever, some people mistakenly assume that because she struggles to speak or move, she is mentally impaired. “It can be frustrating when people talk to my support workers instead of directly to me, or when they simplify their language because they think I can't understand,” she said. "I always make sure to correct them. My mind is fully intact, and it's important to educate others about that.”
Through her advocacy, Sharon has made it clear that while MND is a devastating condition, it doesn't define who she is. She continues to be a dedicated mother, an active supporter of MND research, and a strong advocate for those living with the disease. Her journey is one of resilience, courage, and a determination to ensure that her voice is heard—even when it’s harder for others to listen.