CORRECTION: New York Sen. Michelle Hinchey, Emma Heming Willis Join Families of People With Frontotemporal Degeneration To Call For Increased Awareness And Research Into Underdiagnosed Disease
The conference also featured an art exhibit with works by people with frontotemporal degeneration (FTD); the disease can spark creativity in some people
Houston, Texas, May 06, 2024 (GLOBE NEWSWIRE) — A previous version of this press release contained an incomplete quote from Sen. Michelle Hinchey. The full, corrected quote is in the third paragraph below.
New York State Sen. Michelle Hinchey spoke Friday about her pioneering work advancing legislation to increase FTD awareness and research at the AFTD 2024 Education Conference to more than 1,000 attendees from around the country and the world, including people with FTD and dozens of family members caring for loved ones with the disease. Emma Heming Willis, the wife of actor Bruce Willis, also spoke about her family’s decision to go public with her husband’s FTD diagnosis, how important community support is to her, and the need to raise awareness of the underdiagnosed dementia, which strikes tens of thousands of Americans, often in the prime of their lives.
Insert link to clips from the conference
Sen. Hinchey, whose father died of FTD in 2017, sponsored the first-ever resolution recognizing FTD Awareness Week in New York. She said her father’s diagnosis sparked her interest in using her platform to advocate for FTD legislation.
“Anyone with direct experience battling FTD knows how isolating it can be, and AFTD has created the kind of platform through its annual Education Conference that inspires people to turn tragedy into action,” Sen. Hinchey said. “For me, this fight has always been personal — it started the moment my dad was diagnosed — and I’m proud to be able to use my platform to raise awareness and push legislation that will give us a better understanding of this terrible disease in the hopes of eradicating it once and for all. I thank AFTD for inviting me to tell my story as this year’s keynote, for being a lifeline to my family when we needed it, and for their ongoing support of countless others in their times of need.”
In a conversation with Susan Dickinson, CEO of The Association for Frontotemporal Degeneration, Willis spoke warmly about the support she has received from the FTD community. She also spoke about why she decided to go public with her husband’s diagnosis.
“I never wanted our daughters to think that this was some kind of family secret,” Willis said. “I felt like it was very important to come out and say what it was. I wanted them to see us raise awareness on a global scale, because that’s the kind of reach their father has. And I know that he would want us to do that.”
Dickinson thanked her for her bravery and also for using her platform to bring attention to FTD.
“We are grateful to Emma and Sen. Hinchey for championing awareness of FTD, a disease that was hardly known just a couple years ago. Through their work and the work of families, we can help the public to understand FTD, help prevent misdiagnosis, and spark research into treatments and a cure,” Dickinson said.
Watch the full edited version of their conversation
The conference also featured an art exhibit showcasing work by people with FTD, as well works by people whose family members were diagnosed with FTD.
FTD is a group of brain disorders caused by degeneration of the frontal and temporal lobes. In the beginning, people often appear physically healthy despite neurodegeneration that is occurring. The most common symptoms are uncharacteristic personality changes, apathy, and unexplained struggles with decision-making, movement, speaking, or language comprehension. These symptoms occur infrequently at first but increase over time as the disease progresses.
The young onset dementia is the most common form for people under age 60, though it may be diagnosed in people from their 20s to their 80s. Unlike Alzheimer’s disease, memory loss is not a hallmark of FTD. There is no treatment for the fatal disease, but research is advancing and clinical trials underway today provide hope for an approved therapy in the not-too-distant future.
FTD is also often misdiagnosed as a mental illness 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 can take 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, especially among people of color.
To learn more about AFTD and its work, go to https://www.theaftd.org/
About AFTD
AFTD is the leading organization focused on helping people and families impacted by FTD, and driving research for a cure. Our organization is committed to facilitating and funding FTD-focused research that can hold the key to ensuring more accurate diagnosis, prevention, treatments, and a cure, with implications for other forms of dementia and related neurodegenerative diseases.
CONTACT: Cristian Salazar The Lead PR 929-584-8731 cristian@theleadpr.com
