Childhood Dementia Initiative

What Childhood Dementia Initiative does

Childhood Dementia Initiative is an Australian-registered charity (ABN 84 642 096 053) founded in 2020 by Megan Maack, a former CEO of the Sanfilippo Children's Foundation and mother to two children with Sanfilippo syndrome. Headquartered in Sydney, NSW with a 16-person team, the organization operates as a non-profit advocacy, research coordination, and policy body serving families affected by over 100 genetic conditions that cause childhood dementia, alongside the researchers, clinicians, and policymakers who support them.

Its core offerings are organized programs rather than software products. The Childhood Dementia Research Alliance connects nearly 500 researchers across disciplines; the Family Advocates program mobilizes more than 70 families to share lived experience with policymakers and media; the Online Community and Parent Knowledge Network provide peer support and knowledge exchange; the Service Directory connects Australian families to healthcare and disability services; and the Childhood Dementia Knowledgebase provides clinical resources for health professionals. The annual FACE it awareness campaign anchors public engagement on Childhood Dementia Day.

Revenue is generated through diversified fundraising streams: individual donations (including monthly recurring gifts of $35, $50, $65, or $100), fundraising events such as treks and Gold Coast Marathon entries, corporate partnerships, and planned giving via bequests. The organization partners with Australian research institutes (Murdoch Children's Research Institute, Flinders University, QIMR Berghofer, University of Tasmania, UNSW) and peer charities (Mito Foundation, Sanfilippo Children's Foundation, Alzheimer's Scotland), and is actively campaigning for the government to fund a proposed National Childhood Dementia Unit that, per its From Crisis to Hope report, would deliver $61.5 million in economic savings over five years from a $12.6 million investment.

Name

Childhood Dementia Initiative

Legal name

Childhood Dementia Initiative

Website

https://childhooddementia.org

Company type

Private

Founded year

2020

Operating status

Operating

Headcount range

11–50 employees

Short description

Childhood Dementia Initiative is an Australian non-profit, founded in 2020, that coordinates research, care improvement, and policy advocacy across 100+ genetic conditions causing childhood dementia, serving affected families, researchers, clinicians, and policymakers.

Ownership category

akta.pro rank

Product category

Rare Disease Advocacy and Support

NAICS

Other Individual and Family Services (624190), Services for the Elderly and Persons with Disabilities (624120)

SIC

Services-Social Services (8300)

akta.pro primary industry

Early Childhood & Child Development Policy Research (EDADADAJ)

akta.pro secondary industries

Parenting Education for Special Needs & Developmental Differences (EDACALAK), Special Needs Early Intervention & Preschool Programs (EDAKAAAE)

Keywords

• Rare disease advocacy
• Childhood dementia research
• Nonprofit health advocacy
• Family support services
• Policy change campaigns

Headquarters

HQ city

Warringah Mall

HQ country

Australia

HQ region

Oceania

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Individual Donations: Individual donations from the public, including one-time and monthly recurring donations. Donation options include preset amounts ($35, $50, $65, $100) with monthly billing cadence.
2. Fundraising Events: Trek programs, running challenges (Gold Coast Marathon), and DIY fundraising activities that engage supporters to raise funds.
3. Corporate Partnerships: Corporate supporter program where businesses can support the initiative.
4. Bequests (Gifts in Wills): Planned giving program where donors can leave gifts in their Will to support the organization long-term.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels6 records

Core offering

Childhood Dementia Initiative is an Australian non-profit that delivers a coordinated suite of programs across 100+ genetic conditions causing childhood dementia. It accelerates research through the Research Alliance, supports families via the Family Advocates Program, Online Community, Parent Knowledge Network, and Service Directory, equips health professionals through the Community of Practice and Knowledgebase, and drives policy change through the FACE it campaign and advocacy initiatives.

Product overview

Childhood Dementia Initiative is a non-profit organization that does not offer a traditional software product. Instead, it provides a coordinated suite of programs and services to transform research, care, and policy responses for children with dementia. The core offerings include the Research Alliance (connecting nearly 500 researchers), the Family Advocates Program (with 70+ active families), the Online Community and Parent Knowledge Network for family support, a Service Directory for Australian families, the Childhood Dementia Knowledgebase for health professionals, and the FACE it awareness campaign. Fundraising tools including trek programs and event participation complete the portfolio. These programs work across three strategic areas: research acceleration, care improvement, and advocacy/policy change.

Differentiator

Problem solved

Functional benefit

Products and services

• Research Alliance A collaborative global network connecting researchers working across multiple childhood dementia disorders concurrently to accelerate research and treatment development.
• Family Advocates Program A program where families share their lived experiences with policymakers, researchers, and media to drive policy and research change for childhood dementia.
• Online Community A digital platform connecting families affected by childhood dementia for mutual support, peer connection, and knowledge sharing.
• Parent Knowledge Network A program enabling parents of children with childhood dementia to share real-world knowledge and learn together through online sessions.
• Australian Support Services Directory
• Childhood Dementia Knowledgebase
• Community of Practice
• Childhood Dementia Research Symposium

Quantifiable outcome

• $61.5 million in economic savings over 5 years from a $12.6 million investment through the National Childhood Dementia Unit

Named customers1 record

Segments4 records

Ideal customer profiles5 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Ten partnerships are on record, tiered core and minor.

• Alzheimer's ScotlandcoreStrategic or Co-development PartnerPartnership to enable Alzheimer's Scotland to extend their existing services for adults with dementia to children, bridging the gap in care services.
• NSW HealthcoreStrategic or Co-development PartnerCo-hosting roundtables with NSW Health to deeply listen to families and better understand challenges they face in the health system.
• UNSW ResearcherscoreStrategic or Co-development PartnerPartnership with University of New South Wales researchers to document the psychosocial impacts on families globally, confirming gaps in quality care and support.
• Australian Dementia NetworkminorStrategic or Co-development PartnerWorking with peak Australian dementia organizations to improve care and support for families affected by childhood dementia.
• Murdoch Children's Research InstitutecoreStrategic or Co-development PartnerProfessor John Christodoulou serves on the Scientific and Medical Advisory Committee and leads genomic medicine research at MCRI.
• Flinders UniversitycoreStrategic or Co-development PartnerProfessor Kim Hemsley leads the Childhood Dementia Research Group at Flinders Health and Medical Research Institute.
• QIMR Berghofer Medical Research InstitutecoreStrategic or Co-development PartnerAssociate Professor Anthony White leads Cellular and Molecular Neurodegeneration research at QIMR Berghofer.
• University of TasmaniacoreStrategic or Co-development PartnerAssociate Professor Anthony Cook leads the Stem Cell Models Group at the Wicking Dementia Research and Education Centre.
• Mito FoundationminorStrategic or Co-development PartnerSean Murray, CEO of Mito Foundation, serves on the Childhood Dementia Initiative Board, bringing expertise in not-for-profit research and patient community support.
• Sanfilippo Children's FoundationminorStrategic or Co-development PartnerNon-profit partner focused on Sanfilippo syndrome, sharing common goals in childhood dementia advocacy and research.

Scale indicators7 records

Recent moves7 records

Expansion highlights6 records

Direct peers

• Mito Foundation: Australian nonprofit supporting the mitochondrial disease community while driving research. Mito Foundation CEO Sean Murray sits on the Childhood Dementia Initiative Board. Directly comparable as a rare-disease advocacy and research-funding nonprofit with overlapping childhood dementia conditions.
• Sanfilippo Children's Foundation: Australian nonprofit focused specifically on Sanfilippo syndrome, one of the 100+ childhood dementia conditions. The Childhood Dementia Initiative's CEO Megan Maack is the former CEO of this organization, making it the most directly comparable peer in mission, geography, and disease focus.
• Rare Voices Australia: Australia's national peak body for rare diseases, advocating for policy, access, and awareness. Comparable as an Australian umbrella advocacy organization pursuing systemic policy change on behalf of a fragmented patient population, similar in approach to Childhood Dementia Initiative's collective model.
• Australian Dementia Network: Australian peak body for dementia research and care. Listed as a strategic partner of Childhood Dementia Initiative. Comparable as a dementia-focused advocacy and research coordination body, though traditionally oriented toward adult populations.
• Batten Disease Support & Research Association: Global nonprofit dedicated to Batten disease, a key childhood dementia condition within the 100+ covered by Childhood Dementia Initiative. Comparable as a disease-specific rare disease advocacy and research funder targeting one of the umbrella's constituent conditions.
• Cure Sanfilippo Foundation: US-based nonprofit focused on Sanfilippo syndrome research and advocacy. Directly comparable disease-specific model with parallel fundraising, research funding, and family support programs targeting one of the same conditions as the Childhood Dementia Initiative.
• Genetic Alliance Australia: Australian nonprofit supporting individuals and families affected by genetic conditions. Comparable as an umbrella support organization for genetically caused conditions, directly relevant to the 100+ genetic childhood dementia conditions Childhood Dementia Initiative addresses.

Broad incumbents

• Children's Cancer Institute: Australia's leading childhood cancer research organization. Relevant as the comparator cited by Childhood Dementia Initiative itself (12x fewer clinical trials per patient than childhood cancer); comparable organizational model of disease-focused research funding and family advocacy at substantially larger scale.
• Alzheimer's Association: Largest US-based voluntary health organization dedicated to Alzheimer's and all dementia, including care, research, and advocacy. Listed indirectly comparable via partnership with Alzheimer's Scotland; relevant as a broad dementia incumbent with substantially greater resources and adult focus.
• Alzheimer's Research UK: UK's leading dementia research charity funding prevention, diagnosis, and treatment. Comparable as a dementia-focused research funder and policy advocate, but operates at much larger scale and primarily addresses adult-onset dementia.

Market position

Strengths5 records

Weaknesses3 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/channel/UC5G91Fs_RVP-wWgfkoIuoPg
• Facebookfacebook.com/childhooddementiainitiative
• LinkedInlinkedin.com/company/childhood-dementia-initiative
• Instagraminstagram.com/childhooddementia

Revenue estimate

Valuation estimate

Number of profiles

Profiles15 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Childhood Dementia Initiative