Volume XVII, Issue 2 Summer 2020 COVID-19 and FTD Research: Challenges and Silver Linings The COVID-19 pandemic has brought Chair in Neuroscience Research. A as manuscript reviews, from home, lab significant new challenges for families researcher in basic science, Gao’s experiments were largely placed on facing FTD, and it has also brought new studies use different approaches to hold. obstacles for the scientists seeking to try to find the underlying mechanisms “We’ve since started up again,” he better understand and treat this disease. of FTD and other neurodegenerative noted, and while he is hopeful that Dedicated researchers across our field conditions will allow for studies to speak to a strong sense of determination move forward without shutting down to treat and cure FTD despite the again, he added that “the pace is slower obstacles—and identified changes made now than it was pre-COVID, because in this difficult operating environment people don’t stay in the lab as long for that could bring future advances. At the the sake of safety.” outset of the pandemic, many labs shut down to prevent the spread of COVID-19. One of AFTD’s first Postdoctoral This restricted operations and brought Fellows, Todd Cohen, PhD, now helps some studies to a temporary halt. train graduate students and other postdocs as an assistant professor “We lost about three months…but we’re at the University of North Carolina doing the best we can,” said Fen-Biao Neuroscience Center. He has spent Gao, PhD, a professor of neurology at Fen-Biao Gao, PhD much of the pandemic working from the University of Massachusetts Medical diseases. While Dr. Gao has been able home, writing academic papers while School and the Governor Paul Cellucci to continue aspects of his work, such helping to care for his children. (Continued on page 4) INSIDE THIS ISSUE Zoey’s Extraordinary Playlist Brings FTD Caregiver/ Aisha Adkins........................ 2 FTD Awareness to National TV Zoey’s Extraordinary Playlist, which Levy) better connect with her father Mitch News Briefs..........................2 concluded its first (Peter Gallagher), who is season on NBC in May, unable to speak due to Summer Appeal....................3 is helping to shine a progressive supranuclear light on FTD, bringing palsy (PSP). Covid Research (cont.)........4 awareness to a national Show creator Austin Zoey’s Playlist (cont.)...........5 stage and helping to create a sense of Winsberg drew inspiration for the story from his late Donations..........................6-7 connection for families facing the disease. father’s journey with PSP. Helping Hands.....................8 A scene depicting the cast of NBC’s “I was not even aware Branded as a musical Zoey’s Extraordinary Playlist of this disease before my Education Conference.........8 “dramedy,” the show follows a young father was diagnosed,” Winsberg told woman who, after an incident in an MRI AFTD. “Writing about everything I went Make a Difference...............9 machine, gains the ability to hear the through at the time [was] both therapeutic innermost thoughts of people around and healing. It also had the added benefit Take Action...........................9 her as songs and musical numbers. of creating national awareness around a The AFTD-Team..........10-11 This newfound ability helps Zoey (Jane relatively rare disease. (Continued on page 5) 2 The Association for Frontotemporal Degeneration Volume XVII, Issue 2 Summer 2020 Spotlight on…Aisha Adkins, FTD Caregiver Aisha Adkins never thought she would find Shortly after Rose was diagnosed, Adkins “Everyone’s care journey is different, and being herself in a caregiver role so early in life, but and her father decided it best that able to learn coping mechanisms to deal with after her mother, Rose, was diagnosed with he continue to work to retain health these things has been very, very helpful,” she FTD, she placed her career benefits. So Adkins, who said. “I think it’s something all caregivers need.” on hold to help with her had just started a job in Yet Adkins also emphasizes the feeling of care. healthcare at the time, isolation that comes with FTD caregiving put her career on hold Rose first started showing – notably for younger adults whose peers, to become a full-time symptoms around eight finding themselves consumed by early careers caregiver for her mom, years ago. Adkins, who and newfound independence, may not whose increasingly was in college at the time, understand. disruptive behavior cast recalls her mom being doubt on her ability to “Being a millennial caregiver can be incredibly unable to remember safely stay home alone. isolating because it doesn’t represent the recipes and losing her sense quintessential American experience,” she said. “At the time I assumed I of direction. But soon, “It can be really difficult to find people to would take off for a few what started as memory relate to what you’re going through.” challenges progressed: months and maybe get Rose would overreact to professional caregiving Adkins, who recently decided to go back to school to earn a master’s degree at Georgia simple mistakes made Aisha Adkins (left) and her help shortly thereafter,” around the house and parents, Ron and Rose she said. “I wasn’t fully State University’s Andrew Young School became obsessed with certain aware of the scope of what of Public Studies, has immersed herself in television programs. Realizing something I was choosing to do.” Adkins has now new opportunities to do research and work was wrong, the family decided it was time been a full-time caregiver for the last around caregiving. She is involved in multiple to consult a doctor. eight years. projects and organizations that aim to make a difference in the caregiving field, specifically Early on, the challenges of the role Rose’s symptoms were initially attributed in improving dementia and care outreach became apparent to Adkins. For example, to stress; after a second opinion, she was to African-American communities, and by caring for a parent with a life-altering misdiagnosed with Alzheimer’s disease. advocating for caregiver rights. diagnosis significantly altered her career “She was then prescribed medications trajectory. “I initially started to panic a She has also launched her own organization to that were ineffective, as she seemed to get bit, but quickly remembered that I’m here help raise awareness of millennial caregivers worse at a rapid pace,” Adkins said. “So, I because my mom needs me,” she said. and the unique challenges they face. She joined some support groups online and did hopes her work will help provide a sense of As time went on, Adkins felt her concerns some preliminary research and saw there support and community for millennials and over work grow, as did worries about her are other options, that it could be another people of color. own health (worries exacerbated by her type of dementia.” lack of employer-based health insurance). “I would love to see a world where young adult The family sought yet another opinion. To find a sense of balance, she had to caregivers, particularly those in marginalized “Almost immediately the doctor was able to get creative. She started to use writing communities, have the support they need,” she pinpoint her condition as FTD,” Adkins said, and music as therapeutic outlets and said. “I’m really passionate about filling in the adding that the diagnosis came as a relief: “It worked to improve her diet and exercise, gaps and am looking forward to opportunities was nice to have some answers, or at least boosting her energy and stamina, which to make a difference and a better future for be able to put a name to what was going on.” in turn helped her care for her mom. folks.” AFTD News Briefs World FTD Awareness Week Begins Sept. 27 AFTD Sponsors Virtual Dementia Care Summit World FTD Awareness Week 2020, an annual event that AFTD was a sponsor of the 2020 National Research Summit on brings together FTD advocates from around the globe, will Care, Services, and Supports for Persons with Dementia and take place from September 27 to October 4. FTD advocates Their Caregivers. Hosted by the National Institute on Aging, in worldwide will participate in the week’s events, including conjunction with the Department of Health and Human Services a 24-hour World FTD Marathon, which will feature FTD as part of the National Alzheimer’s Project Act, the Dementia presentations from across the globe. World FTD Awareness Care Summit was moved to an all-virtual platform in 2020 Week is organized each year by World FTD United, an due to the COVID-19 pandemic. The event took place over the international coalition of FTD-focused organizations of course of three days in July and August. Among the scheduled which AFTD is a member. For more information, visit speakers was Laurie Scherrer, a Pennsylvania woman living with AFTD’s website. FTD, who also spoke at the 2019 AFTD Education Conference. The Association for Frontotemporal Degeneration Volume XVII, Issue 2 Summer 2020 3 Spotlight on…Aisha Adkins, FTD Caregiver 4 The Association for Frontotemporal Degeneration Volume XVII, Issue 2 Summer 2020 COVID-19 and FTD Research (Continued from page 1) “I would definitely say we took a hit in research equipment, and tending to collection. Dr. MacKenzie and his team’s terms of productivity,” he told AFTD. “But administrative tasks have been priorities response in some cases has been to we’re fortunate to be well- in the meantime. pursue collaboration with facilities whose funded and the science is policies allow autopsy for COVID-19 Potential for the Future moving forward.” Continuing positive cases. FTD research is “more The ALLFTD network, a Tammaryn Lashley, MD, PhD, an associate important than ever,” he National Institutes of Health– professor of neurology at University noted, in light of the struggles funded research consortium College London, described a similar for families now contending focused on measuring and dynamic.