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
May 06 2024 - 3:05PM
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 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