A message from the Chair of our Board of Directors
Over the past 11 years, we have made remarkable strides in advancing research and providing hope to families affected by Sanfilippo syndrome. However, like many small, rare disease organisations, we are facing financial challenges that make it increasingly difficult to sustain our operations in their current form. While our mission and commitment to Sanfilippo families remain unwavering, we must be transparent about these realities and the steps we are taking to address them.
Over a Decade of Impact
Through your incredible support and partnership, we’ve accomplished what once seemed impossible:
- Invested over $7.5 million into 41 research projects and initiatives worldwide
- Brought Australia's first Sanfilippo clinical trial to our shores, now progressing through the regulatory approval process
- Pioneered the innovative "Brain in a Dish" research platform
- Developed the first-ever global clinical care guidelines
- Created the Global Roadmap for Sanfilippo Syndrome Therapies
- Built an international network of researchers spanning 14 countries
- Co-founded the International Sanfilippo Syndrome Alliance
- Generated vital research tools and resources that continue to advance the field
- Seed-funded the Childhood Dementia Initiative, which now drives advocacy and action for all children with dementia, including those with Sanfilippo.
These milestones have transformed the landscape of Sanfilippo research. Where there was once limited research and few treatment prospects, there is now hope, with multiple therapeutic approaches under development and a clear path forward through the Global Roadmap.
Our collective efforts have laid a strong foundation for the future. Now, to sustain and build on this progress, we must evolve.
The Next Chapter
After careful consideration, I’m pleased to announce that the Sanfilippo Children’s Foundation’s mission will be carried forward by the Childhood Dementia Initiative, the organisation established to advocate for all children with dementia through research, care, and policy. As a result, the Sanfilippo Children’s Foundation will cease to operate as a separate entity.
As you may know, the Childhood Dementia Initiative, founded in 2020 by our founder and former CEO Megan Maack (formerly Donnell), shares our deep commitment to families affected by Sanfilippo syndrome. Megan’s personal experience as a parent of two children with Sanfilippo ensures that the needs of our community remain at the forefront.
This decision was made because we believe this transition will better meet the needs of the Sanfilippo community in a sustainable and impactful way. The Childhood Dementia Initiative brings complementary capabilities and an aligned mission, ensuring that the vital work we’ve started will not only continue but thrive.
The transition will take effect from late January. With this change, the team—Kerren, Dani, and Rebecca—has completed their work. We thank them for their dedication to our cause and wish them the very best for the future.
What This Means for Our Community
- Your connection with the Sanfilippo community remains intact and valued
- The focus on Sanfilippo syndrome research remains a priority
- Childhood Dementia Initiative's Family Advocate’s Program gives families opportunities to join forces with other families to create change
The team at Childhood Dementia Initiative is available to answer any questions you have at hello@childhooddementia.org
While our journey is entering a new chapter, our vision of a world without Sanfilippo remains unchanged. With this transition, our ability to achieve that goal is stronger than ever.
Thank you for your trust, support, and belief in our mission. Together, we have accomplished extraordinary things, and I am confident that this next phase will bring us even closer to a future free of Sanfilippo.
Alison J. Butt, PhD GAICD
Chair
Board of Directors
Sanfilippo Children's Foundation