I had a feeling the collective impact of childhood dementia was significant but couldn't find any literature to confirm this, so I commissioned a pro bono burden of disease study (to be published shortly) to understand the breadth and depth of the problem. The results of this study are both horrifying and compelling.
- Childhood dementia is largely unknown and neglected - there are more than 70 types of childhood dementia, only 5 of which have an effective treatment; and
- Each of these 70 conditions are very rare (for example Sanfilippo affects 1 in 70,000) but collectively they result in 1 in 2,780 babies born developing childhood dementia in their early years. This is a similar number to well known conditions like Motor Neurone Disease and Cystic Fibrosis, and means there are around 700,000 children living with dementia in the world right now.
The other thing I couldn’t find was examples where researchers had been funded to look at the group of disorders collectively, whether that was studying the common disease mechanisms or simply sharing research infrastructure.
With the full support of the Board of the Sanfilippo Children’s Foundation, I have decided to respond to this problem and the huge opportunity I see before us to change how things are done and create broader impact.
I am creating a new, completely separate, organisation called Childhood Dementia Initiative focused on driving innovative and collaborative research into the disorders that present with childhood dementia. The Sanfilippo Children’s Foundation is supporting the Childhood Dementia Initiative as it will:
- attract funding, awareness and research interest to the collective group of childhood dementias (which includes Sanfilippo); and
- potentially accelerate development of therapeutics for Sanfilippo through increased funding and research, and also through the broader study of this group of disorders.
To enable me to successfully launch and build this new initiative, my role at Sanfilippo Children’s Foundation is changing. I will move to a strategic leadership role on the Board and will hand over the day-to-day running of the Foundation to an experienced CEO (recruitment to commence shortly), who will build on the solid foundations we have developed together over the last 7 years.
The Sanfilippo Children’s Foundation is well placed for ongoing success with robust governance, sound strategy, and strong expertise in our team and research partners. The Board and the team are excited about the additional benefit of a new CEO bringing a new perspective and energy to our cause, while I continue my involvement at a strategic level.
As not only the founder of the Foundation, but also as a parent to 2 children with Sanfilippo, I am confident that the new CEO will continue to drive the organisation towards its purpose to achieve a world without Sanfilippo. I am excited for this next chapter and look forward to your ongoing support of the Sanfilippo Children’s Foundation.