Camp Breakaway’s Smith-Magenis Syndrome (SMS) Family Camp began on Friday, March 16. Supported by more than 100 volunteers and staff, 19 families who have a child with SMS came together to enjoy friendship, fun and laughter, and share information and research into SMS.
Since 2003, 57 Australian families from across Australia have attended this unique four-day camp, an event that only happens once every two years. Smith – Magenis Syndrome is a rare disorder characterised by congenital, behavioural and cognitive issues including mild to moderate intellectual disability, disrupted sleep patterns and self-harm. In fact, the symptoms, though they do not appear in every child with SMS, are extensive. Camp Breakaway is highly regarded for its camps for children and adults with a disability, and they are seen as more like a holiday than simply respite. “But, the SMS camp is special,” said Camp Breakaway’s General Manager, Mr Terry Hayes.
“Over the past 15 years, Professor Ann Smith, co-discoverer of the syndrome, has travelled from the United States to San Remo to meet with the families, and to bring them up to date on research to assist parents in the management of this complex syndrome,” said Mr Hayes. “It is always a unique opportunity for parents to learn and to meet with Prof Smith as well as other parents in the same situation. “They can share experiences and gain support from each other.” Professor Smith, a geneticist from the National Institute of Health, located in Bethesda, Maryland, USA, arrived at Camp Breakaway on March 13. “It is one of the highlights of my work. “I am honoured to be here, and I thank Camp Breakaway for making it all happen,” said Prof Smith.
Source: Media release, Mar 14 Denise Pastor, Camp Breakaway