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People personally impacted by FTD have the most powerful voices to advocate for our community and reduce the stigma that often comes with a diagnosis. By sharing our stories, we can persuade lawmakers to take direct action on legislative, policy, and regulatory changes, leading to earlier and more accurate diagnosis, advancements in research, and improved access to care management and support options.
Launched in fall 2023, AFTD’s Advocacy Action Center provides resources to help volunteers engage with their legislators to increase FTD awareness and communicate the needs of those facing the disease.
AFTD Advocacy
“Making a Difference – Becoming an FTD Advocate”: This March 2024 webinar offered guidance on how to become an advocate and highlighted available resources.
This map reflects advocates’ progress in securing proclamations and resolutions to recognize FTD Awareness Week (as of 9/30/2024).
Det Personer med FTD Advisory Council ensures the insights and voices of people living with FTD are at the forefront of AFTD’s work. Eight Council members give input on our policies, programs, and services, contribute to the Education Conference program, and write articles for our weekly e-newsletter, Help & Hope.
AFTD staff serve on 21 national committees and working groups, including the CReATe Consortium of the NIH Rare Diseases Clinical Research Network, FNIH Biomarkers Consortium, and Milken Institute's Alliance to Improve Dementia Care, to ensure FTD remains a priority in policy discussions centered on all forms of dementia, and to inform these assemblies on the lived experience of the disease.
Members of the Council shared their perspectives on encountering and navigating stigma while living with FTD at our 2024 Education Conference. They also hosted a breakout session to expand on this topic and offer advice to others.
Emma Heming Willis: FTD Advocate
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