My late mother, Jackie, started showing FTD symptoms in 2016, but she wasn’t diagnosed until the following year. That in-between phase, from symptom onset to diagnosis, was the scariest and most confusing time of our lives. My family knew something was drastically wrong, but we didn’t know what, or why it was happening. Beyond the uncertainty and fear, what I most recall from that period was the horrible sense that my family was all alone, forced to manage my mom’s inexplicable behavioral and personality changes without knowing where to look for support.

Once my mom got her FTD diagnosis, we finally had a name for her condition. Then we found AFTD and its abundance of information and resources specifically created for families like ours. The most rewarding aspect of AFTD, however, and the reason I have remained active with the organization long after my mom’s death, is the community that exists around it.

AFTD’s growing community – comprised of persons diagnosed, care partners and caregivers, family members, clinicians and other healthcare workers, researchers, and others – has been an ever-present source of strength and a wellspring of hope for my family and so many like ours. In this report, you’ll read about all the ways that the AFTD community, empowered together, have contributed to our mission during the 2024 fiscal year (July 2023 – June 2024).

After launching our Advocacy Action Center last September, hundreds of people registered to stay updated on new FTD-related bills and to urge legislators to pass them into law. Our volunteers and advocates, including Emma Heming Willis, personally lobbied for FTD legislation in statehouses and town halls across the country. Other community members, such as AFTD Ambassadors Melissa Fisher and Sandra Gonzalez-Morett, with her sister Diana, furthered awareness by engaging with the media. And we are reaching more people worldwide than ever before through our social media channels, connecting with more than 10,000 followers on Instagram alone.

We continue to foster deep connections with leading scientists and researchers, fueling new discoveries and therapeutic trials over the past year. Industry representatives joined researchers, advocates, regulators, and AFTD staff and Board members to discuss the future of FTD research at the inaugural FTD Research Roundtable meeting in September 2023. In collaboration with The ALS Association, AFTD issued its first-ever Digital Assessment Tools for FTD and ALS grants to support the development of symptom-tracking digital technologies, which, among other potential benefits, may lead to a speedier diagnosis.

Educating healthcare professionals about FTD can also hasten accurate diagnosis, and it remains one of AFTD’s top priorities. In the 2024 fiscal year, guest experts joined staff members to present three Healthcare Professional Education webinars; professionals who watched live could apply for continuing education credits. We also collaborated with community members who have lived experience – including AFTD’s Persons with FTD Advisory Council – to develop brand-new resources to help people living with a diagnosis.

AFTD will continue to work on behalf of all facing this disease – to improve the quality of life of people affected and drive research to a cure. Our goals are ambitious, but I’m proud to say that we are unwaveringly committed to achieving them.

Empowered together, I know we can end FTD.

Sinceramente,
Kimberly Pang Torres
Presidente do Conselho da AFTD