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Megan Maack

Dementia Communities?

The CEO of Childhood Dementia Initiative has been pleasantly surprised 

By Michael Dobbyn

A conversation with Megan Maack

Childhood Dementia Initiative logoAustralian native Megan Maack is the mother of two children with Sanfilippo Syndrome. She’s also the CEO and founder of Childhood Dementia Initiative (CDI), an organization launched in 2020 that focuses on representing childhood dementia as a collective—rather than 70+ separate/isolated genetic disorders—to help drive therapeutic innovation and ultimately improve the outcomes for children with dementia across the world.

During our conversation with Megan in 2023, we asked her about collaboration efforts (if any) that currently exist between the adult and childhood dementia communities.  She said that she’s very pleasantly surprised at the level of engagement and support that she and her organization have received so far from the adult-onset community—particularly from Dementia Australia, which is one of Australia’s largest adult-dementia organizations representing the 400,000+ Australians living with dementia.  Megan pointed out that even though the underlying root causes for adult and childhood dementia are generally quite different and unique (for a myriad of reasons), there is undeniably plenty of opportunity for collaboration and joint advocacy across the dementia communities in the years ahead—and those collaboration efforts are now firmly underway.

Furthermore, because all types of dementia—in adults as well as in children—ultimately target the brain, there’s a high likelihood that any therapeutic solutions or even delivery mechanisms that demonstrates success or advancement for one type of dementia will have crossover scientific benefits for many other types of dementia as well. Click below for the 2-minute clip.

Mike Dobbyn lives in Pennsylvania with his wife, Jenna. A Massachusetts native and proud Duke University alumnus, Dobbyn works in finance. Dobbyn’s oldest son, Connor, 15, has Sanfilippo syndrome type C—which has prompted Dobbyn to launch a community support and advocacy organization named the Sanfilippo Project.

Published by the Sanfilippo Project and hosted by Mike Dobbyn and Michael Schmanske (Prognosis:Innovation), this video was launched Nov. 2023 and Maack discusses the collaboration opportunities with and support of adult dementia communities.

Sanfilippo syndrome is a rare genetic metabolism disorder. A change in a single gene makes a child’s body unable to break down certain carbohydrates—leading to serious problems in the brain and nervous system.