This Spinal Muscular Atrophy (SMA) Awareness month, we’re celebrating the people who redefine what’s possible living with a neuromuscular condition. Carolyn is one of them. Carolyn Campbell-McLean is MDNSW’s Senior Community Support Specialist. She’s also a leader, tireless advocate and mentor. With decades of lived experience and professional expertise, Carolyn shows us that people with SMA are experts in their own lives – and that expertise can change the world.
Carolyn has lived with SMA as long as she can remember. She’s always been fiercely determined and self-directed. For more than 30 years, she’s worked for more choice, flexibility and control – taking charge of her care, the support she needs and how she lives each day. This determination shapes the way she connects with others.
“Because of my own lived experience, I have an idea of some of the challenges – and some of the joys – that people experience living with a neuromuscular condition,” Carolyn shares. “It allows me to relate and connect with people on a deeper level. Our journeys may be different, but the bond is shared, and that connection is incredibly special.”
Carolyn’s connection to the community runs deep. She has spent most of her career in community services, social work, disability, government and education. Her work has focussed on the power of lived experience and promoting the voices of people with disability in influencing policy and practice. She also supports others living with neuromuscular conditions to self-advocate and live their best lives.
Carolyn brings all that experience, personal and professional, to her role at MDNSW. She knows that the best support combines knowledge and empathy.
“Professionals often come in and out of your life,” she says. “But people with lived experience are here for the long run. That longevity gives us a unique perspective on what supports actually work and what helps people live well.”
This depth of experience makes Carolyn a trusted guide for people with neuromuscular conditions. One way she shares that wisdom is through Peer Connect, an MDNSW program that brings together people living with neuromuscular conditions and their families.
“Peer Connect is about recognising that lived experience is equally as valuable as professional experience, if not more so!” Carolyn explains. “For years I had a whole range of professionals telling me what was best. Over time, I started to realise that I have a lot of equally important and valuable experience in sifting through information and deciding what’s useful for me and what’s not. Through Peer Connect, we get to share that knowledge and support each other to live the lives we choose.”
Carolyn pours her heart into connecting people and helping them advocate for themselves. She also knows where the gaps are and isn’t afraid to speak up for better systems and supports. From untangling complex healthcare pathways to addressing gaps within the NDIS, she shows up to make a difference.
Recently, Carolyn joined The Neurological Alliance Australia, representing MDNSW to help create a national plan for neurological conditions aimed at reducing health inequities.
“I can take those issues forward through our advocacy networks and make a bit of noise about the changes that need to be made in society,” she says. Her insight is a tool for change, helping shape better supports and policies that benefit the whole community.
For families living with SMA, the future is changing.
“Now there’s treatment and hope,” Carolyn says. “For the first time, there are options to keep people more physically stable. It’s exciting for younger families to see role models – older people with SMA who are living independently, travelling, having careers and relationships. It shows what’s possible and is an important balance with some of the messages given by the medical profession.”
But hope doesn’t erase the challenges. Daily life with SMA can still mean frustration, inaccessible spaces, red tape and outdated attitudes. But Carolyn sees awareness as the first vital step towards inclusion.
“If society can jump on board and make things inclusive and accessible, then there’s potential for everyone with SMA to live their best life,” she says.
During SMA Awareness Month, Carolyn’s message is one of visibility, empowerment and possibility: the world needs to see people with SMA for who they are. “We’re lawyers, graphic designers, creators, social workers, musicians and anything we want to be,” she says. “We might not be strong physically, but we’re certainly strong mentally and emotionally, and if you harness your strengths you can go a long way. The sky’s the limit for people living with SMA.”
Because when we listen, include and empower, we don’t just raise awareness. We shape a better future.
Say hello & contact our friendly team today.
Email: info@mdnsw.org.au
Phone: (02) 9888 5711
Freecall: 1800 635 109
Muscular Dystrophy NSW
ABN 11 774 587 436
Phone: (02) 9888 5711
Freecall: 1800 635 109
Email: info@mdnsw.org.au
Postal Address: PO Box 3071, North Strathfield NSW 2137
Muscular Dystrophy NSW would like to acknowledge the Traditional Custodians of the land on which we live and work, and we pay our respects to their Elders past and present. We extend that respect to all Aboriginal and Torres Strait Islander peoples.
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