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."
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.
SOURCE Association for Frontotemporal Degeneration