15th International Conference on Frontotemporal Dementias – Oct. 8-11, 2026

Holly Hayes Lecture on FTD

On behalf of the International Society for Frontotemporal Dementias (ISFTD), I am delighted to announce that Susan L-J Dickinson, MSGC, has been selected to deliver the inaugural Holly Hayes Annual Lecture on FTD at the ISFTD 2026 in Philadelphia.

The Holly Hayes Annual Lecture is supported by the Holly Hayes FTD Endowment Fund, established in 2024 through the generosity of family and friends of Holly Hayes – an incredibly lively and multi-talented woman whose life was cut short by frontotemporal dementia. This endowed lecture creates a permanent plenary platform within our Annual Meeting to showcase global leadership in research, care, and advocacy, and to ensure continued visibility for advances in understanding and treating FTD.

Susan Dickinson
Susan L-J Dickinson, MSGC, AFTD Chief Executive Officer

A genetic counselor who has more than four decades of experience facilitating communications among lay, scientific, and medical communities. Under her leadership, AFTD has expanded in scale and impact, from a $400,000 organization with a part-time staff of three to a $14 million+ organization with 56 full-time staff. During her tenure, AFTD has expanded programs to meet and advocate for the care and support needs of FTD families, and invested in specific strategies to advance FTD research and drug development, including five multi-year, multi-million dollar research initiatives targeting FTD diagnosis and treatment.

The Holly Hayes Annual Lecture reflects ISFTD’s commitment to advancing scientific knowledge, fostering collaboration across disciplines and borders, and strengthening the global FTD community. It recognizes individuals whose leadership has had sustained impact on research, care, and advocacy.

The selection committee for the Holly Hayes Annual Lecture felt that awarding the inaugural lecture to Susan Dickinson is a fitting tribute to Holly’s life. Susan has worked in the FTD field for more than two decades, most notably serving as CEO of The Association for Frontotemporal Degeneration (AFTD) from 2008 to 2026. During this time, she led AFTD’s transformation from a small nonprofit into the world’s leading FTD advocacy organization, significantly expanding its scale, programs, and global influence. Under her leadership, AFTD established the first postdoctoral fellowships, pilot grants, drug development grants, and biomarker grant programs focused exclusively on FTD. Through initiatives such as the FTD Treatment Study Group, the FTD Research Roundtable, and the Holloway Summit, AFTD became a central convener in the field, bringing together clinical experts, biopharma, regulators (FDA, EMA), NIH, funders, and advocates to accelerate progress toward treatments. The organization also advanced cross-disease collaboration, particularly between FTD and ALS, and – together with Emma Heming Willis and a global network of advocates – significantly expanded awareness of FTD and reduced stigma around dementia.

Her career reflects a consistent commitment to collaboration, clarity of communication, and measurable progress in the field.

We are deeply grateful to Holly’s family and friends for establishing this enduring legacy within ISFTD. We look forward to welcoming you to Philadelphia in October 2026, where the inaugural Holly Hayes Annual Lecture will take its place as a cornerstone of our Annual Meeting and as a lasting tribute to Holly’s life.

Olivier Piguet,
ISFTD President