At Communicare we believe in the power of community. From providing training to TAFE Diploma of Early Childhood Education & Care students, to working together with local early learning centres to share knowledge with their staff, we believe in raising the awareness of the importance of optimum communication skills for every child.
Sanfilippo Children’s Foundation
We feel privileged to know and work with a very special family, The Donnell’s who have begun the Sanfilippo Children’s Foundation following the discovery that both of their children, Isla and Jude had this disease.
Sanfilippo, or MPSIII, is a metabolic disorder. 1 in 70,000 children is born with the inherited condition which is caused by an enzyme deficiency. The lack of enzyme prevents the body from going through its natural recycling process, causing cellular malfunction.
Sanfilippo affects mostly the Central Nervous System (CNS). Over time, brain cells fill up with waste that the body is unable to process. As the brain gets progressively damaged, children experience hyperactivity, sleeplessness, loss of speech and cognitive skills, mental retardation, cardiac issues, seizures, loss of mobility, dementia and finally death, usually before adulthood.
There is currently no treatment or cure available to families diagnosed with this devastating disease. Yet researchers around the world are working hard to bring therapeutic treatments to life, with several clinical trials already completed or underway.
Amongst different therapeutic avenues being explored, gene therapy represents today the most promising avenue for Sanfilippo patients. Research towards a cure for Sanfilippo contributes to the development of treatments for more complex neurological disorders like Alzheimer’s and Parkinson’s diseases.
The mission of the Sanfilippo Children’s Foundation is to drive research, enable access to effective treatments and improve the quality of life for Australian children affected by the fatal childhood disease, Sanfilippo Syndrome. From increasing international awareness, fund raising to the recent release of a song, Hope for Isla and Jude by many amazing artists, it really is a true story of people power making a difference. Please share and support their great work.
The Bloody Long Walk
Mitochondrial disease (mito) is a debilitating genetic disorder that robs the body’s cells of energy, causing multiple organ dysfunction or failure and potentially death. Mito can affect both children and adults; due to its genetic basis, the disease often affects multiple family members. The prognosis for children diagnosed with Mito is often dire with severe lifestyle impediments and significantly reduced life expectancy.
Initially thought to be a rare disease (affecting less than 1 in 20,000 people), with advances in genetic medicine it is now recognised as affecting 1 in 200 people (over 100,000 Australians), with 1 in 5,000 suffering a severe or life-threatening form of the disease. Those with mild or no symptoms are unknowingly at risk of passing the disease on to their children.
I was a part of a team walking the ‘VERY’ long 35kms from Palm Beach to North Head on a stunning Sunday in October. The fantastic coastal scenery and cheers from supporters living with Mito made the distance all the more worthwhile to help raise much needed funds to fight this debilitating disease.
If you belong to a community group and feel that we could support you in some way, please get in touch.