Dialog Box


Childhood Dementia: the heartbreak and the hope


Our Executive Director, Megan Donnell, delivered this powerful talk as part of a TEDx Youth event, exploring the bond between two children, Mia Murchison and Isla Donnell, and the devastating impact of two genetic disorders on two different families.  


Sanfilippo Syndrome and Batten's disease are just two examples of childhood dementia. If there were ever two words that should not belong together, it's 'childhood' and 'dementia'. For Megan Donnell this is of course deeply personal as the mother of Isla and Jude, two Sydney siblings who are both battling the rare and fatal genetic childhood disease, Sanfilippo Syndrome. Meg's TEDx Youth speech took place at Moriah College as part of an independently arranged TEDx Talk.



How you can help?

Your generous donations will fund research into a potential treatment and a cure for Sanfilippo. Clinical trials for gene therapy, enzyme replacement and ground-breaking projects testing new treatments and new drugs are happening right now. You can help us in the fight against this devastating condition.