Washington, DC, April 15, 2026 (GLOBE NEWSWIRE) — The Association for Frontotemporal Degeneration (AFTD) hosted its first Capitol Hill briefing, Frontotemporal Degeneration: Shining a Light on a Little-Known Dementia, on April 14 in the Rayburn House Office Building. The event brought together Hill staffers with caregivers, advocates, researchers, and federal leaders to raise awareness of frontotemporal degeneration (FTD) and highlight the urgent need for greater investment in research and support services. A recording of the Capitol Hill briefing is available on AFTD’s YouTube channel.
AFTD was honored to be joined by Rep. Debbie Dingell (D-MI), Chair of the Congressional Assisting Caregivers Today (ACT) Caucus, who provided remarks highlighting the critical role of caregivers and the need for policies that better support them. Rep. Dingell emphasized the importance of recognizing and supporting family caregivers, particularly those caring for individuals with complex conditions like FTD.
“Today’s briefing with the Association for Frontotemporal Degeneration called attention to just how important it is that we support caregivers, like those caring for individuals living with FTD, who face extraordinary emotional, financial, and practical challenges, often while balancing careers and raising families,” said Congresswoman Dingell. “Supporting caregivers is a core tenet of AFTD’s mission, and I am proud to work alongside them in advancing policies like the Credit for Caring Act and strengthening federal resources. We must continue working together to ensure that every caregiver receives the support, benefits, and recognition that they deserve.”
The briefing featured remarks from Dr. Amy Adams, Director of the National Institute of Neurological Disorders and Stroke; Dr. Frank Shewmaker, FTD Program Director at the National Institute of Neurological Disorders and Stroke; Dr. Chiadi Onyike, Associate Professor of Psychiatry and Behavioral Sciences at Johns Hopkins University and Chair of the AFTD Medical Advisory Council; and Natasha Jasso Smith, an advocate living with FTD. Susan Dickinson, CEO of The Association for Frontotemporal Degeneration, served as moderator.
Keynote speaker Emma Heming Willis, wife of actor Bruce Willis and author of the New York Times best-selling book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, shared her personal experiences as a caregiver navigating FTD’s profound challenges. Her voice, alongside those of individuals living with the disease, clinicians, researchers, and advocates, underscored both the human toll of FTD and the opportunities to make meaningful progress through policy and research.
Mrs. Willis stated, “FTD is non-partisan. It doesn’t care if you’re a Republican or a Democrat. It walks into homes across America every day, without warning or mercy. The systems families are told to rely on just aren’t built for this disease. I appreciate the hard work of Congress members that understand this, and encourage everyone to learn more about FTD. We must keep federal funding and scientific momentum focused on treatments, cure, and caregiver supports.”
FTD is the most common dementia for people under age 60, though it may be diagnosed in people from their 20s to their 80s. Unlike dementia caused by Alzheimer’s disease, patients with FTD often experience personality, behavioral, and movement changes. There is currently no treatment for the disease, but research is gaining momentum. Clinical trials underway today provide hope for an approved therapy in the not-too-distant future.
FTD is also often misdiagnosed as a mental health condition by medical professionals who are not familiar with the symptoms of the disease; this can sometimes lead to improper treatments and even psychiatric hospitalization. On average, it takes over three and a half years to receive an accurate diagnosis. In the meantime, families often struggle to understand their loved ones’ uncharacteristic and unsettling behavior. Researchers believe the disease is widely underdiagnosed.
For more information about FTD or AFTD’s mission to improve the lives of people living with FTD and to fund research toward effective treatments and a cure, visit www.theaftd.org.
- Emma Heming Willis, Rep. Debbie Dingell (D-MI), and Susan L-J Dickinson
- Emma Heming Willis Delivering Remarks During Briefing