Statement on behalf of the SSPA:
The feature story that aired on 60 Minutes (Channel 9) on Sunday evening on the worldwide achondroplasia drug trial has opened up a huge conversation throughout Australia particularly via social media. The story featured Professor Ravi Savarirayan discussing the trial that boasts Melbourne as its largest centre. Part of the story were two young people who both have achondroplasia one who is taking part in the trial, one who is not. Their loving and supportive parents stood by them on the segment.
The SSPA is confident that Professor Savarirayan and his team at the Murdoch Children’s Research Institute are conducting this drug trial with the health and safety of these children as their prime consideration.
Professor Savarirayan has provided us with the following statement:
“Our aim is to simply try and prevent or decrease significant medical complications and keep these children healthy as adults, not to “cure” them or make them taller.
For instance, babies with achondroplasia have a 5 times increased risk of sudden death over those without it, and we hope that if the medication improves spinal bone growth this will be reduced or eliminated without risky surgeries.”
We would like to clarify a word raised within the segment when referring to the hopes of the drug trial providing “normal” lives for these children. Men and women of all ages with achondroplasia, and indeed any of the 300+ conditions of dwarfism, do lead fulfilling, happy and meaningful lives. With achondroplasia, and many other forms of dwarfism, some individuals will live their entire lives with no medical complications and no need for medical or surgical intervention. Others may experience complications that require medical and/or surgical intervention during the course of their lives.
The achondroplasia drug trial does not have the goal of ‘curing’ the condition, nor does it have the goal of making children with dwarfism average height. The drug trial is hopeful that it will be able to assist specific areas where complications can occur, such as bowing of the legs, sleep aponea, and spinal stenosis (narrowing of the spinal cord) just to mention a few. The SSPA believes anything that can help children and young adults avoid the need for surgeries, hospital stays, time off school, time away from their families/friends, and away from their ‘normal’ everyday lives, is absolutely a step forward.
We wish Professor Savarirayan, his team and those fortunate to be involved within the trial of this drug, every success and happiness.
National President – SSPA
2015 SSPA Convention: Perth WA
Dates – Sunday 27th September to Saturday 3rd October 2015
Venue – Perth, WA, Woodman Point Recreation Camp
WA Branch of the SSPA invites you to join us for our fabulous 2015 SSPA National Convention.
For a full report about the upcoming Convention, check here.
The SSPA National Sports Weekend began back in 1995 purely to provide another opportunity for the State of Origin basketball clash to take place between NSW and Victoria. Attended by about 30 people, the weekend saw Victoria claim a 25–18 victory to win the Rosemary Hobbs Trophy for the fourth time. Since 1996, the weekend has evolved into the second largest event on the SSPA’s annual national calendar, with numbers of attendance in the 80’s. Today, this weekend aims to provide competitive and fun sporting opportunities for all across a variety of sports and for all abilities. And this year, we will celebrate our 21st year.
For full details about the Weekend, including registration and itinerary, check it out here.
At the 2014 Convention, it was announced that the 48th SSPA Convention will be held in Perth, Western Australia at the beautiful Woodman Point Recreation Camp which has its own pristine beach and is just 8km south of Fremantle in October 2015. The announcement took the form of a presentation by the Western Australian Branch Committee to the members present. More details will be forthcoming.
SSPA Victoria just launched their own Facebook Page – search “SSPA Victoria” to view the page. Please ‘like’ if you wish to receive updates and notifications about all State Branch events.
Whilst you’re searching, don’t forget that SSPA Queensland, Tasmania and South Australia all have their own Facebook Pages.