The Empathy Effect
From September 18th thru the 22nd scientists, researchers and advocacy leaders convened in Amsterdam to share their latest advancements in FTD (Frontotemporal Dementia) research and support on the plenary stage.
Emma Heming Willis, wife of actor Bruce Willis, opened the conference by addressing the 750+ attendees with a heartfelt challenge: "My husband played superheroes, but you are the real superheroes." Bruce Willis' FTD diagnosis in 2023 shocked the world, and his family—like all of us affected by dementia—are determined to find a cure.
You may be wondering, “In such a science-focused setting, why was For Their Thoughts (FTT) present?”
FTT is deeply committed to ensuring that the voices of those living with FTD are represented.
Our mission at ICFTD was to provide an opportunity for professionals and caregivers in attendance to come together, step away from the all day science talk and remind researchers of the real lives they impact and the difference they make with an inside-out experience.
During the conference, FTT:
- Led over 40 neurologists, scientists, caregivers, and advocacy leaders, including AFTD’s executive director, Susan Dickinson, and members of the Vanishing Family through our immersive experience over the weekend.
- Presented a "poster blitz" on the plenary stage titled “The Empathy Effect: Improving FTD Support, Medical Practices, and Societal Awareness through an Immersive Approach.”
- Represented the lived experience community—people like you and me.
- Participated in a nonprofit organization gathering hosted by AFTD to discuss common concerns and build valuable connections.
Throughout the conference, the hallways were lined with hundreds of posters detailing groundbreaking research from around the world. A select few had the chance to present our work on the main stage. On September 22nd, with hands shaking, I stepped onto the stage.
“The hypothesis I am here to discuss– is that the level of empathy and understanding of FTD profoundly impacts the action taken to support the care for FTD individuals, medical practices, and societal awareness. This hypothesis is derived from my lived experience. In 2008 – my mother received an FTD diagnosis, thru a letter in the mail. No direction or advice on how to navigate this terminal diagnosis was offered…. One month later, my mother’s mother began showing similar symptoms…”
But I ended with hope:
“…To this end, FTT in partnership with AGE-u-cate Training Institute, offers an opportunity to gain an inside out perspective …and to walk in the shoes of our loved ones and patients…94% of participants surveyed felt the training gave them helpful tools and techniques for providing care… We hope this enhanced empathy will open up more dialogue, increase diagnoses, improve trial design and overall act as a bridge between the science and human side of FTD."
What’s next?
We keep going. We focus on families and multipliers.
- Community Outreach: In September, FTT trained over 65 first responders with tools to respond to dementia-relations. Going into 2025, we will partner with community organizations to continue first responder and public trainings.
- Early Intervention: The wait time to see a dementia specialist is 6-8 months and expected to increase to 2 YEARS. FTT is piloting workshops at a local high school this November to expose students to what dementia is, how to enhance quality time and connection with loved ones affected, and explore career paths related to dementia care.
- Every physician reached can help hundreds: We are hopeful with each opportunity like ISFTD we foster professional relationships that will bring empathy training to primary care physicians, research coordinators and other frontline healthcare works who directly support our loved ones.
To date, we have trained 450+ and funding permitting, we aim to double that in 2025.
Acknowledgments:
Our presence at this world conference was made possible by the generous support of our sponsors: The AFTD, Bluefield Project to Cure FTD, Alector Inc., End the Legacy, DHI Engineering, and a few anonymous donors.
We are also deeply grateful to Morgan Suchin, Paul Wicks, and his team for donating their expertise and time, ensuring our poster was ready to be presented at the conference.
Finally, to the researchers, academics, and pharmaceutical representatives—thank you for giving us hope. This journey takes a village, and every one of us, including you reading this right now, is part of this precious ecosystem driving change.
Thank You to our Sponsors
Other ICFTD Reads:
"This was life changing"
"Thank you for helping me put myself in my husband's shoes."
"I have been working in this industry for 16 years. I didn't know I didn't get it until now."
"We have only heard of the obstacles people with dementia face on a daily basis but to have given the opportunity to see the world through their eyes with his hands-on training was a game changer!"