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
2024年5月7日 - 1:02AM
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
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.
“FTD is one of those diseases that consumes your entire life.
For the person inflicted and the family both, it’s almost too easy
to be overtaken by grief, despair, frustration, and the feeling of
being overwhelmed. That’s how we felt. But it’s truly been a
rewarding journey to turn our sadness into action,” said Hinchey,
who sponsored the first-ever
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 AFTDAFTD 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.
Cristian Salazar
The Lead PR
929-584-8731
cristian@theleadpr.com