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Media Release

Sanfilippo Children’s Foundation receives $42,500 to support children affected by rare childhood disease

5 July 2016

Freshwater-based community organisation Sanfilippo Children’s Foundation has received a grant of $42,500 to implement a program to support children affected by Sanfilippo Syndrome and their families, thanks to St.George Foundation.

Sanfilippo Syndrome is a rare genetic condition that causes fatal brain damage, usually before children reach adulthood. The grant from St.George Foundation will go towards coordinating support and information for children affected by the disease, including facilitating involvement in medical research to help find a cure or effective treatments.

Megan Donnell, Founder of Sanfilippo Children’s Foundation said, “Sanfilippo Syndrome is a tragic disease with very few specialists and little research conducted in Australia. Prior to establishing the Sanfilippo Children’s Foundation, there was no targeted informational support for children and their families affected by the condition in Australia.

“We are thrilled to partner with St.George Foundation and this generous donation will enable us to provide assistance to children around Australia who are affected by Sanfilippo Syndrome,” Megan added.

Vanessa Barry, Head of St.George Foundation said, “We are delighted to support Sanfilippo Children’s Foundation in their important work for children affected by this rare disease.

“Sanfilippo Children’s Foundation is one of 12 community organisations who received a share of over $400,000 in funding in our latest community grant round. We look forward to announcing more grants to local organisations committed to transforming the lives of children,” added Vanessa.