ABOUT SANFILIPPO CHILDREN’S FOUNDATION
The Sanfilippo Children’s Foundation was established in 2013 by Sydney mother, Megan Donnell following the diagnosis of both of her children, Isla and Jude with Sanfilippo.
The purpose of the Foundation is to drive research for a world without Sanfilippo Syndrome. This will be achieved by:
-Funding research which might halt progression of the condition, reverse damage caused or improve quality of life for patients with the condition;
-Providing clear, accurate and up-to-date information to diagnosed families regarding the disease, therapeutic avenues and current research programs;
-Raising awareness of the disease amongst the community, including the medical profession;
-Advocating for improved outcomes for the Sanfilippo patient community;
-Improving the diagnosis path – more accurate and earlier diagnosis to enable appropriate treatment.
The purpose of the Sanfilippo Children’s Foundation is to drive research for a world without Sanfilippo Syndrome. Our mission is to halt progression of the condition, provide the most up-to-date information to diagnosed families and raise awareness of this disease amongst the community. We are Australia’s advocate for families dealing with Sanfilippo Syndrome, providing support and improving the diagnosis path to enable better treatment today and in the future.
