A Heartwarming Weekend: Wrapping Up the Smith-Magenis Syndrome Camp at Manyung

Image ID: A large group photo taken outdoors on a basketball court surrounded by greenery. The group consists of diverse individuals of varying ages, including adults, children, and toddlers, some seated and others standing. Two prominent trees frame the group, with a wooden pergola visible in the background. The scene captures a warm, community-oriented atmosphere.

This past weekend, DSR hosted families, children, siblings and supporters impacted by Smith-Magenis Syndrome (SMS) gathered with Smith-Magenis Syndrome (SMS) Australia at the beautiful Camp Manyung on the Mornington Peninsula. Against the backdrop of stunning coastal views, the weekend offered a unique blend of camaraderie, educational sessions, and memorable experiences designed to strengthen community bonds and provide valuable insights into SMS.

Welcoming Families to a Supportive Community

As families arrived at Camp Manyung, they were greeted with a warm welcome and an itinerary filled with purpose and excitement. The tranquil setting of the camp provided the perfect backdrop for families to relax and connect. Many attendees expressed how much they looked forward to this weekend as a unique opportunity to engage with a community that truly understands the challenges and joys of raising a child with SMS.

“It’s so nice to be with other people who just get it. They don’t stop and stare; they just carry on with what they’re doing. It makes me feel normal.” – 16 year old sibling of a child with SMS. 

Image ID: A young girl with blonde hair and a bright smile riding a red adaptive tricycle labeled "MAGNUM." She is wearing a pink and white sweatshirt with a cartoon design and light pink shorts, paired with pink Crocs. The background features an outdoor setting with trees and a paved surface, suggesting a joyful and active moment.

Engaging Activities for All

The camp was filled with engaging activities that offered a mix of fun, learning, and physical engagement. From tree rolling, archery, bike riding and a disco! the weekend’s events allowed children with SMS to explore new skills in a welcoming and supportive setting. These activities are designed with the children’s abilities and interests in mind, ensuring that everyone could participate without barriers.

Meanwhile, parents had the chance to take a breath, connect with other caregivers, and participate in valuable workshops hosted by SMS Australia. The shared experience of raising a child with SMS created a unique bond among attendees.

Image ID: A young woman wearing a blue helmet labeled "EDELRID" and clear-framed glasses is captured outdoors. She has a thoughtful expression, dressed in a gray hoodie with safety straps visible, indicating participation in an outdoor or adventure activity. The blurred background includes trees and another person wearing a dark hat in the foreground, partially out of focus.

Educational Workshops for Empowered Parenting

Beyond activities for the kids, educational workshops for parents provided essential tools and strategies for managing SMS-related challenges. Medical experts, therapists, and InPlace Living representatives offered guidance on behavioural strategies, sensory management, and creating SMS-friendly home environments. The camp organisers ensured these sessions were practical, enabling families to take home new approaches that can make daily life smoother and more fulfilling.

Image ID: Left to right is Cally (SMS AUS) Gail Koop, Gail Reiner and Anne Smith (TEAM USA) and Liz Tesone (DSR)

Insightful Presentation by InPlace Living: Creating Comfortable Living Environments

A standout feature of the camp was a highly informative presentation by InPlace Living on living arrangements tailored to meet the unique needs of individuals with SMS. The session offered practical tips for creating supportive and adaptable environments that promote comfort, safety, and independence. Families gained insights on everything from sensory-sensitive home modifications to resources available for assisted living and future planning.

The presentation emphasised that living spaces should reflect each individual’s needs and strengths, fostering autonomy while providing necessary support. InPlace Living's expertise sparked important conversations among families about residential options and adaptations, empowering them with information they can use as their children grow.

One parent shared, “The insights from InPlace Living’s presentation opened our eyes to new possibilities for our child’s future living environment. It was invaluable to learn from experts who really understand our unique needs.”

InPlace Living kindly sponsored the Parent Pub Lunch on Sunday, providing all families with the opportunity to leave camp and celebrate the conclusion of the weekend.

Building Lasting Connections and Community

At its heart, the SMS camp at Camp Manyung was about connection. Families, siblings, and children came together in an environment where they felt supported and understood. 

As the weekend concluded, families departed with renewed friendships, invaluable insights and a strengthened sense of community. The conversations sparked by the presentations and impromptu chats over meals will undoubtedly support many as they continue their SMS journeys, providing confidence and the reassurance that they are not alone.

A Heartfelt Thank You to our Supporters 

We extend our heartfelt gratitude to InPlace Living for their sponsorship and our generous donors, whose contributions made this camp possible. Their support had a profound impact, providing families with essential information on creating safe, nurturing environments for their loved ones with SMS.

Thank you to all the families in attendance, SMS Australia, Team USA and everyone involved in this year’s camp it was truly unforgettable. We look forward to continuing this tradition in the future, building on the incredible connections and support that define the Smith-Magenis Syndrome camp experience.