Mensaje del CEO

Dear friends,

As you read this, AFTD, with crucial input from our community and trusted partners, is deep into strategic planning that will shape our work from July 2025 through June 2028. Charting a course for our future necessarily requires looking back at what we’ve accomplished, and I’m immensely proud of the progress we’ve made – much of which is captured in this report.

Since our last strategic plan was implemented in 2022, AFTD has nearly doubled our staff – investing in hiring deeply talented and knowledgeable professionals whose focus areas range from public policy to scientific research to FTD care. Simultaneously, we are cultivating an ever-growing network of equally passionate advocates and experts to work alongside this team.

Our volunteer leaders are uniquely dedicated to helping other families on the FTD journey, while AFTD’s Board ensures that we have the greatest possible impact. Our Medical Advisory Council adds invaluable wisdom from the world’s leading experts in FTD science and symptom management, and the Persons with FTD Advisory Council contributes vital perspectives from those living with a diagnosis.

Together, we are positioned to make significant strides over the next three years – but we must keep our momentum going.

Over the next year, AFTD aims to advance care practices by identifying and disseminating promising new strategies to reduce frustration for persons diagnosed and their care partners or caregivers, and improve access to accurate information and quality care. We will update current resources and produce new ones for families affected, with a focus on those recently diagnosed. Our robust social media following continues to grow, informing a wider audience that dementia is more than just Alzheimer’s.

Our community – particularly those living with a known FTD-causing genetic variant – is ready, willing, and able to participate in clinical trials that will lead to the first approved treatments for FTD. With our partners at the FTD Disorders Registry, AFTD is working to connect people with research opportunities that will help extend our knowledge of the disease and discover the biomarkers that are desperately needed for timely and accurate diagnosis.

Real progress toward a future free of FTD is only possible if state and federal lawmakers know about this disease. Thanks to our growing advocacy initiatives, recognition among this crucial audience is growing, and we will work to engage more volunteers to help us explain the importance of FTD research and dementia care to legislators nationwide. AFTD is also working to make our services more inclusive of Black, Latinx, Asian American and Pacific Islander, veteran, and LGBTQ+ communities, ensuring that the word “together” on the cover of this report truly represents all of us.

And it will take all of us to end FTD. But empowered together, there is no limit to what we can achieve.

With gratitude,

Susan LJ Dickinson, MSGC
CEO, AFTD