Hundreds to gather at Parramatta Park to raise awareness for rare genetic disorder effecting 13,000 people in NSW
This Sunday, 19th March, hundreds of people living with neuromuscular conditions, along with their families and friends, will gather in Parramatta Park for the Big Red Roll + Stroll (BRRS), raising awareness about the condition by walking, running, rolling or strolling the 3km loop circuit.
Hosted by Muscular Dystrophy NSW (MDNSW), the event will give people living with this rare genetic disorder the opportunity to celebrate and reconnect after a challenging and isolating few years. It will also help raise awareness and critical funds, which will go towards the delivery of MDNSW’s programs including camps, support coordination, advocacy and peer connect meetups.
BRRS Ambassador, Carolyn Campbell-McLean, lives with a type of muscular dystrophy called Spinal Muscular Atrophy and has been an active member of the neuromuscular community for many years.
“Living with an incurable rare genetic disorder, like muscular dystrophy, can be very confronting and isolating for many people, which is why events like this are so special. When we unite, we develop friendships, comradery, support and strength. To feel like you’re not alone, and part of a community that gets you, is an amazing feeling,” Carolyn said.
“I promised my late husband Danny that I would continue his legacy of supporting people with MD, so this Sunday I will wear white in his honour, and roll 3km along the Parramatta River for him and all the friends with MD I have lost.”
MDNSW, CEO, Charlotte Sangster said that she was looking forward to finally being able to hold the event in-person, after the Covid-19 pandemic and severe flooding saw the event held virtually for the past two years.
“We’re big on connection at MDNSW, so because we’re finally holding this event in-person, we’re going all out. We have an event village celebration planned for immediately after the walk, which will feature fun kids activities, music, info stalls, food vendors and a special visit from the Governor of NSW, Her Excellency, The Hon. Margaret Beazley AC KC, who is also our Patron.”
“I encourage everyone to come down to Parramatta Park and join in the fun and meet some of the amazing people in our neuromuscular community,” Charlotte said.
The Governor of NSW, Her Excellency, The Hon. Margaret Beazley AC KC, said that as Patron of Muscular Dystrophy NSW, she was delighted to participate in this important community event.
“Whether rolling or strolling – this day is all about celebrating our supportive community, spending time with each other, and remembering those loved ones who are no longer with us. It is also an opportunity to re-invigorate MDNSW’s vital services and programs which are so critically important to people living with neuromuscular conditions in New South Wales,” Her Excellency said.
You can register for the event or make a donation by visiting www.team-md.org.au/event/big-red-roll-stroll-2023