When Susan L-J Dickinson was hired to lead AFTD, the organization had just two other part-time employees. Much of its day-to-day work was done by a small group of passionate volunteers, including AFTD’s all-volunteer Board of Directors and Medical Advisory Council. Its budget was $400,000.

With Ms. Dickinson at the helm, AFTD has grown into the country’s largest nonprofit devoted entirely to FTD. With a budget now exceeding $12 million, more than 50 full-time staff, and more than 600 highly active volunteers, AFTD works every day to offer help and hope to families facing this disease.
After 18 years of transformative leadership, Ms. Dickinson will be retiring from her role as AFTD’s CEO in May 2026.

The entire AFTD organization is enormously grateful to Ms. Dickinson for her vision, her hard work, and her dedication. We wish her the happiest of retirements, and look forward to continuing to steer the ship that she has so ably guided since 2008.

The AFTD Board has established a special task force to lead a thoughtful and comprehensive search for a successor in the coming months, aided by a trusted consultant. AFTD’s next leader will commit to guiding the organization based on priorities outlined in the recently published 2025-2028 AFTD Strategic Plan.

“AFTD has never been stronger — I have full confidence that this transition will not impact the momentum we are building across FTD diagnosis, treatments, and care,” Ms. Dickinson said.

“Susan’s leadership has transformed AFTD into a powerful force for progress across the FTD field. The Board and I are honored to have worked alongside her during this extraordinary period of growth,” said AFTD Board Chair Rita B. Choula, MA. “As we look ahead, we carry deep respect for her legacy and a strong commitment to continuing the path she has laid — welcoming a new leader who shares her dedication to advancing progress for all those affected by FTD.”

Some of AFTD’s many notable accomplishments during her tenure as CEO include:

• Awarding millions of dollars in grants to dozens of researchers throughout the world, helping to advance FTD science and the search for biomarkers and viable treatments.
• Establishing the AFTD Education Conference as the country’s top annual FTD-focused event, bringing together thousands to connect with others and learn from FTD experts.
• Overseeing the growth of AFTD’s national network of support, which today comprises more than 90 FTD support groups across the U.S.
• Securing generous gifts from major donors that have fueled AFTD’s growth and will prolong its remarkable record of stability.
• Creating the Comstock Grant program, which has financially supported thousands of care partners and persons diagnosed since its 2009 inception.
• Partnering with the Bluefield Project to Cure Frontotemporal Dementia to co-found the FTD Disorders Registry, with support from the Rainwater Charitable Foundation. Anyone affected by FTD can share their deidentified information with the Registry, helping to build a global data set that will contribute to the success of current and future FTD clinical trials.

AFTD aims to have a new CEO in place before Ms. Dickinson retires, to allow for a smooth transfer of organizational leadership. “This transition represents continuity and opportunity for AFTD’s future,” Ms. Dickinson said, adding, “I remain fully committed to leading AFTD throughout the succession, and all current initiatives, commitments, and priorities will move forward without interruption.”

During the transitional period, Ms. Dickinson will share with her successor all she has learned about AFTD: its culture, its mission, and its community of persons diagnosed, care partners, healthcare professionals, researchers, donors, volunteers, and more. “I’ve never worked with a more passionate community, or one more committed to creating a better future – with more support, accurate information, and effective treatments – for the next families facing the FTD journey,” she said.

“I’ve learned that this community doesn’t readily accept the hand they’ve been dealt,” she continued. “Every day I see individuals and families draw upon enormous reserves of resilience, hope, and strength to pay it forward through research participation, volunteering, and activism. And that’s never changed in all the years I’ve spent at AFTD.”

The next CEO will inherit AFTD’s many strong partnerships with like-minded organizations and allies. “We can’t realize our mission without tending to the deep, mutually supportive relationships we’ve established with our partners in the neurodegenerative-disease space, as well as with the biopharmaceutical companies currently running clinical trials,” Ms. Dickinson said. These collaborations have done much to advance our understanding of FTD science and the search for viable biomarkers and treatments.

In addition to working with Ms. Dickinson during the transitional phase, AFTD’s next CEO will benefit from the new AFTD Strategic Plan. The new AFTD Strategic Plan outlines priorities and goals, charting a clear course through June 2028. But, Ms. Dickinson noted, “This will be a new leader with a new vision. While our mission won’t change, I anticipate that the next CEO will make their own imprint on AFTD, and I look forward to seeing how the organization evolves.”

Ms. Dickinson looks forward to the next chapter in her life, which will include much more time spent with family. “One thing this disease teaches us is that we can’t take the time we have with our loved ones for granted,” she noted.

AFTD’s Board has never been more capable. AFTD’s staff has never been stronger. And the landscape of FTD research has never been more promising. The road to more accurate diagnosis – and the first approved therapeutics for FTD – grows shorter by the day. Much of that can be attributed to Ms. Dickinson and her singular leadership style, one characterized by a steady, empathic demeanor, intense focus, and bold ambition.

“Leading AFTD from a small startup to a well-established and respected organization has been the opportunity and pride of a lifetime for me,” she said. “AFTD will always hold a special place in my heart, and I will always be committed to this mission.”

AFTD will provide an update on our search for a new CEO as developments unfold.