Smith-Magenis Syndrome Camps
Camp Breakaway's SMS (Smith-Magenis Syndrome) Camps enhance the lives of children with SMS and their families by holding a four-day respite camp every two years. The last camp was held 1-4 April 2016.
- To celebrate the achievements of all SMS children.
- To give children and the siblings of children with SMS the opportunity to meet.
- To create an atmosphere where parents feel comfortable to discuss their situation with other parents - this often leads to the establishment of a support network that continues long after camps end.
- To create a nurturing environment where the families of children with SMS can enjoy a respite break together.
- To pamper the parents and allow parent only time, whilst providing entertainment and activities for all children - caring for a child with SMS can be very demanding and parents are often burnt-out. The aim of parent only time is to allow them to recharge their batteries and give them much needed time to themselves.
- To provide a research opportunity for the world-leader in SMS research, Professor Ann Smith, to run a research clinic at the camp.
- To provide volunteer opportunities to people who want to make a meaningful contribution to the community in which they live.
Information & Support for SMS Families
PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome) is a non-profit organisation in America dedicated to providing information and support to families of persons with SMS and fostering partnerships with professions to increase awareness and understanding of SMS. For more information, visit their website via one of the links below - the second link is to a brief well written article about the characteristics of SMS.
SMS Camp 2014
At the 2014 camp we welcomed 28 families with children that have SMS and their siblings from all over Australia and Professor Ann Smith from the USA. Professor Smith conducted a research clinic and provided the families with valuable information and recent research updates.
Kindly sponsored by Network of Caring
SMS Camp 2008
Camp Breakaway’s third SMS Camp was held 7-10 November 2008. We welcomed 20 families with children that have SMS and their siblings from all over Australia. Not a bad turn out considering there were only 48 recorded cases of SMS in Australia when this camp was on. The ages of children with SMS ranged from three to nineteen years of age.
The camp was another resounding success, due to the dedication of our wonderful Camp Breakaway team volunteers and staff members. Over 70 part-time and full-time volunteers provided four days of respite for the families. Our volunteers filled many roles, including: one-on-one carers, co-ordinators, parents hosts, sibling companions, kitchen and laundry helpers - the camp would not have been possible without the help of these volunteers.
We also heartedly welcomed back Professor Ann Smith from the NIH (National Insitute of Health) USA on her third trip to one of our SMS camps. During her visit, she held a research clinic. She was also joined by two American SMS parents, Mary Beall and Gail Kopp who assisted her with the clinic - they were affectionately known as 'Team USA' and provided valuable information sessions and insight to our campers.
While the camp was on, we were also visted by NBN - Newcastle, who filmed a story for our local news. The footage showed extended coverage of Jodie Pearson from our video above along with her husband Andrew and family. However, unfortunately the video has gone missing from the original link to their website below, as well as most of the article, although the comments made by readers remain.
Below are testimonials from some of the families that attended this unique camp
"As always the degree of organisation is amazing! The spirit of staff and volunteers is second to none. Thank you Camp Breakaway for delivering service to our SMS families with love."
"We were very impressed with how the SMS carers managed. The camp was amazingly organised. The people were fabulous, committed and supportive."
"Once again it was another successful SMS camp. Our children were taken care of 24/7 by such wonderful giving volunteers. To access Team USA expertise and to spend quality time with parents going through exactly the same situation as we are, thank you we are eternally grateful."
"We as a family enjoyed and loved the camp!!! What Camp Breakaway does for the SMS families is fantastic. You should be all commended for ALL your efforts and dedication. Being a first timer and meeting the other families was so beneficial. As you know, we are not supported a great deal from the medical professionals as they haven't even heard of SMS, so coming to this camp where everyone is in the same boat was so educational and just a relief for us."
"Not sure how you could improve it, you did a great job. Please let all the volunteers know that for our family to feel so cared for and supported and understood gives us the energy to go on."
"Camp Breakaway is a most amazing experience. The generosity and compassion of the volunteers is astounding. We can't thank you enough for making us feel so special."
"It was such a privilege to be able to attend and meet everyone, to be able to speak to the other parents; words really can't describe how much it meant to us. We were so overwhelmed and can't believe that this type of camp exists. We had finally found other people who understood exactly what we go through every day."
We thank the many individuals and organisations that supported this camp, including; Bayline Industries, Commonwealth Carer Respite Centres, GK Brown & Co, LWM Group and The Ian Potter Foundation.