KING OF PRUSSIA, Pa.,
April 14, 2021 /PRNewswire/
-- The Association for Frontotemporal Degeneration (AFTD)
today announced the creation of The Holloway Family Fund, supported
by an initial $2 million donation
from AFTD Board Member Kristin Holloway. The fund, which was
created in honor of the Holloway family's journey with FTD, aims to
further understanding of FTD, drive basic, clinical, and
translational research, and accelerate the path toward effective
treatments and cures.
AFTD is the leading organization dedicated to improving the
lives of people and families affected by FTD, and driving research
for a cure. The Holloway Family Fund gift will be broadly focused
on supporting basic, translational, and clinical research;
expanding the pool of professionals engaged in FTD research;
funding infrastructure and events to encourage FTD researcher and
clinician collaboration; and empowering a community comprised of
individuals diagnosed, care partners, and family members (including
individuals themselves at risk) to play a pivotal role in advancing
research.
The first initiative supported by the Holloway Family Fund is an
expansion of AFTD's postdoctoral fellowship program. These
fellowships seek to attract the best young minds in science to FTD,
and inspire a new generation of researchers to dedicate their
careers to advancing FTD science. An announcement is forthcoming
for the 2022 Clinical Research Training Scholarship in FTD—the
first award of its kind—funded by the Holloway Family Fund,
and the American Brain Foundation in collaboration with
the American Academy of Neurology.
The fund will also support an annual research summit to convene
medical professionals and researchers and encourage collaboration
around a specific, emergent issue. The first summit, envisioned for
early 2022, will seek to accelerate development of digital
biomarkers for FTD. The emergent field of digital biomarkers is
harnessing advances in technology to enable researchers to collect
physiological data via remote monitoring—like a smart watch or
phone--and thus enable participants to provide more, real-life data
without having to get to a clinic.
"FTD has taken center stage in our family's life since my
husband, Lee Holloway, was diagnosed
in 2017," said Kristin Holloway,
AFTD Board Member. "Lee was a brilliant technologist and
entrepreneur who excelled at building technical infrastructure to
solve hard problems. As we continue to navigate this journey and
care for Lee, it's clear that solving the inherent challenges of
FTD will require greater resources and a data-driven approach. It
is vital to find better ways to support research and expand the
medical community's understanding of this disease so that FTD can
be treated, and eventually cured. Focusing the fund on research was
important to our family, and builds on Lee's inherent gift to
create solutions for tough problems."
Lee Holloway was diagnosed with
behavioral variant FTD (bvFTD) in 2017, at the age of 36.
Alexandra Holloway, a NASA
software engineer previously married to Lee and mother to his
oldest child, said, "My son was old enough to watch his father
decline as a result of bvFTD. As a young child, he was deeply
affected by Lee's changes of mind and heart, and that
transformation continues to devastate our entire family." She
added: "I am grateful to Kristin for her work on the board of AFTD,
and for creating The Holloway Family Fund, which will enable
scientists to achieve a better understanding of FTD. I hope
that one day, no child will have to watch a parent succumb to
early-onset dementia."
Since 2016, AFTD has expanded its staffing and its impact
significantly, through engagement from thousands of individual
donors, alongside corporate sponsorship and foundation support. The
Holloway Family Fund amplifies and builds on support provided
through a recent multimillion-dollar gift that established the
Donald and Susan Newhouse Fund, the David Geffen Fund at AFTD, our
annual Hope Rising Benefit, and commitments from donors and
volunteers who lead a range of grassroots events across the
country.
"Kristin's role on AFTD's Board – and her philanthropic
commitment in establishing the Holloway Family Fund – reflect
strong resilience and determination brought into action," said AFTD
CEO Susan L-J Dickinson, MSGC. "She has transformed the lived
experience of an FTD journey into an opportunity to make a
difference in the lives of other families, today and in the future.
And I'm hopeful that her gift will bring new awareness of FTD's
impact in the lives of so many."
AFTD donor and volunteer Donald
Newhouse added, "As a disease that can strike as young as an
individual's 20s, and well into someone's 70s and 80s, FTD brings
together a wide group of advocates determined to prevent this
disease from affecting more families." He added: "I draw
inspiration from seeing Kristin and her family dedicate themselves
so boldly to this mission, and I hope that it will encourage others
who have seen loved ones impacted by dementia join us in bringing
an end to the devastating form known as FTD."
About FTD
The most common dementia under 60, FTD brings progressive
changes in behavior, personality, language, and/or movement. Today,
there are no disease-modifying treatments, and there is no way to
prevent or cure this disease. On average, even receiving an
accurate diagnosis takes 3.6 years. Advancing research into FTD is
likely to have benefits for ALS, Alzheimer's, and other forms of
neurodegenerative disease, and we welcome partnership and support
from others looking to make a difference in the lives of the more
than 60,000 people in the U.S. alone who are affected by this
disease.
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SOURCE Association for Frontotemporal Degeneration