Breakaway invited to the USA

 

"Breakaway have been invited to speak and present at the Smith Magenis Syndrome (SMS) Research Roundtable and the International SMS conference in Reston, Virginia on 16-20th September, 2009" stated Jodie Davis, Breakaway's Funding and Sponsorship Coordinator. Mrs Davis added "th invitation came from world leading researcher into SMS, Professor Ann Smith". more...

 

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 Smith Magenis syndrome (SMS) and fostering partnerships with professions to increase awareness and understanding of SMS.  For further information their website is located at www.prisms.org

 

SMith magenis Syndrome (SMS) Camp

We recently held our 3rd SMS camp on 7-10th November 2008.  We welcomed 20 families from all over Australia, which included the children (3 -19 yrs) with Smith Magenis Syndrome (SMS), as well as their parents and siblings.

 

The camp was another resounding success, due to the dedication of our wonderful Breakaway team volunteers and staff members.  Over 70 (both part-time and full-time) volunteers provided 4 days of respite for the SMS families.  Our volunteers filled many roles including - one-on-one carers, coordinators, parents hosts, sibling companions, kitchen and laundry helpers.  This camp would not be possible without the assistance of these volunteers.

 

We happily welcomed back Professor Ann Smith (from The National Insitute of Health in America) for her 3rd trip to our SMS camp.  During her visit Ann held a research clinic.  Ann was also joined by 2 American SMS parents, Mary Beall and Gail Kopp, who assisted Ann with the clinic.  This team was affectionalty known as 'Team USA'.  They provided information sessions to the families and provided valuable insights for the families.  Click here to read 'Team USA's" testimonials.

  

Our local television station,  NBN, visited the camp and filmed a story for our local news.  The TV footage plus the extended interview with Professor Ann Smith from America and the Pearson Family are located here:  

 http://www.nbntv.com.au/index.php?s=smith+magenis

 

Here are just a few of the comments from some of the SMS families who attended this unique camp:

 

 

"We as a family enjoyed and loved the camp!!!  What 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."

~ The Eris Family, Sydney

 

 

 

 "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."

 ~ The Patrick Family, Coraki

 

 

 

 "Once again another successful SMS camp.  Our children 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."

  ~ Jodie and Andrew Pearson, Matcham

 

 

  

"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."

~ Mary Storch Sydney

 

 

 

 

"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."

~ Mathew and Michelle Carr, Adelaide

 

  

 

"As always the degree of organisation is amazing!  The spirit of staff and

volunteers is second to none.  Thank you Breakaway for delivering

service to our SMS families with love."

~ Kate Tye, Sydney

 

 

 "We were very impressed with how the SMS carers managed.  The camp was amazingly organised.  The people were fabulous, committed and supportive."

~ The Caddy Family, Canberra

 

We wish to also thank the many individuals and organisations that supported this camp, including the Ian Potter Foundation, Commonwealth Carer Respite Centres, LWM Group, Bayline Industries and GK Brown & Co.

 

If you would like further information about these SMS camps, please contact Jodie Davis on 02 4390 7624 or by email at jdavis@breakaway.org.au

 

Our next planned Australian SMS camp will be held in 8 - 11 October 2010.