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. A recent recipient of an AFTD with both a pandemic and tracking the FTD disease FTD Biomarkers award, Dr. Lashley began FTD. process in preparation for clinical trials, has also been the pandemic in a unique, yet fortunate, Missing Connection, and responding to challenges position, able to continue analyzing Thinking Ahead Todd Cohen, PhD brought on by the pandemic. existing data and brain tissue in relation to her study. But the year has also created Andrew Arrant, PhD, an assistant Designed to maximize data barriers to brain donation, which can professor of neurology at the University collection and sharing across multiple prevent collection of tissue samples that of Alabama at Birmingham, shared research sites, the consortium relies could otherwise his perspective as an early-career on a longitudinal FTD experts continue their work, despite lead to important researcher. A 2019 AFTD Basic Pilot Grant approach, studying challenges presented by COVID-19. insight into FTD. recipient, Arrant works in a lab seeking the presentation to better understand the pathologies and and progression of FTD in people and “FTD being such a heterogenous set mechanisms of FTD. While restrictions families over time. Where COVID-related of diseases, we need the postmortem initially slowed operations, Arrant and his restrictions have limited opportunities to samples to confirm diagnosis,” she said. fellow researchers were able to maintain bring in research participants and collect “So, we will have lost quite a number of existing studies, and can now pursue new data in person, the consortium is cases due to the pandemic.” new experiments. brainstorming new ways to continue research, as technology including Policies in this area vary by facility, a Outside the lab, social distancing telehealth creates opportunities for in- situation that can leave families who have restrictions and canceled in-person home appointments and testing methods. planned to donate a loved one’s brain with events have meant that Arrant has seen additional questions and challenges. fewer opportunities to connect, both Across the border in Vancouver, Ian Challenges to Progress, and Challenges with other researchers and with the Mackenzie, MD, a professor of pathology for Families community of people and families affected and laboratory medicine at the University by FTD. He said that he finds himself of British Columbia, and chair One of the ALLFTD missing “the really rich interactions that of AFTD’s Medical Advisory consortium’s co-principal can be incredibly valuable for feedback Council, has faced similar investigators, Bradley Boeve, and generating ideas.” challenges in navigating a MD, a neurologist at the Mayo separate longitudinal study, Clinic and member of AFTD’s In the clinical environment, bringing in and also noted the role MAC, noted that “COVID new study participants is a challenge, telemedicine could play in has clearly slowed progress and researchers have turned their advancing research. in FTD on many fronts.” He attention to preparations that will help to added: “Startup activities for move studies forward as they can safely “By being forced to do certain things remotely or ALLFTD have been delayed, resume. “We’re all thinking ahead to and productivity will be far address hurdles… to set ourselves up for with telemedicine – if we go through the process to get Bradley Boeve, MD less than originally planned success now, before we get the go-ahead for 2020 and likely beyond.” to open the floodgates,” and once again it set up and realize it can be relatively start enrolling participants in clinical effective – this creates potential for the He continues: “But these challenges studies, said Nupur Ghoshal, MD, PhD, future that could be extremely beneficial,” are dwarfed by the impact on persons a neurologist and clinical investigator he added. diagnosed and their families. Many have at the Washington University School of Obstacles for Brain Donation told me that they feel even more isolated Medicine in St. Louis. than before, and many are concerned A pathologist, Dr. Mackenzie has also faced about seeing local health care providers “It’s not how we’re used to doing science,” challenges in collecting tissue samples, due to fear of possible COVID infectivity.” she notes, but she is optimistic about the as protocol at his facility now requires impact her team will be able to have as COVID-19 testing before an autopsy can Researchers are dedicated to advancing things get back online. Sourcing personal be performed. This has resulted in a 24- FTD science in the ways that they can protective equipment and needed hour delay that can interfere with sample during this time. Jennifer Yokoyama, PhD, The Association for Frontotemporal Degeneration Volume XVII, Issue 2 Summer 2020 5 COVID-19 and FTD Research an associate professor at the University through whatever this pandemic may of issuing a public statement declaring of California, San Francisco, bring – and keep reminding its intent to sustain clinical timelines whose work focuses people we’re still here, and through the pandemic where possible, in primarily on the genetics that people are still impacted compliance with local, state and federal of neurodegeneration, has by FTD.” guidelines. been able to utilize this Moving Research Forward For families looking to make a difference time to better focus on data in research during this time, AFTD will and perform analyses that Despite the challenges and promote opportunities for engagement in may have otherwise been concerns that this pandemic research throughout the year ahead and deprioritized to pursue will have continued impact beyond. The Featured Studies page on new experiments. While on research and the families our theaftd.org website, reachable under challenges have arisen AFTD serves, FTD research the Research & Clinical Trials tab, offers surrounding staffing and Ian Mackenzie, MD continues to advance. The a current range of studies recruiting for sample collection, she remains recent launch by Alector, Inc. of participation. And if you have not yet optimistic. its INFRONT-3 phase 3 trial, testing the signed up, the FTD Disorders Registry “We’re doing the best we can to efficacy of a treatment for people at risk (ftdregistry.org) offers a vital way to get compensate quickly,” she said. “It’s for progranulin-based FTD, has brought involved in ensuring future treatments important that we continue our research optimism; the company also took the step and a cure for FTD.

Zoey’s Extraordinary Playlist (Continued from page 1) “I could never have anticipated the daily progression of the disease with my often felt like he was channeling my tremendous outpouring of emails own father, it was easy for me to recall Dad,” Winsberg said. and messages I the various stages When Robert Chambers, whose wife got from other and the many is in the late stages of FTD, watched people who all setbacks we all the show, he felt a strong emotional had been touched encountered along connection – and appreciated the by PSP,” he said. the way.” inclusion of music in the plotline. Over the course For many “Regardless of how quickly this disease of the first season, navigating an FTD runs its course, or how despondent the the show tackled journey of their person may seem, I have been amazed at many topics own, the show how music brings a sudden stimulation related to FTD, has provided an Jane Levy and Peter Gallagher of NBC’s and recognition,” he said. “I am happy including diagnosis and authentic sense of human Zoey’s Extraordinary Playlist that this dreadful disease is being symptom management, connection and empathy, brought to the attention of so many the challenges of caregiving, and grief both of which Winsberg hoped to foster. who don’t understand the condition or and loss. Winsberg hoped to portray “I can’t get over what a great job Peter the ramifications it has on the family. Mitch’s care and disease progression in Gallagher is doing; his face looks exactly Thank you, Austin Winsberg, for your a way that was true to his own family’s as my husband’s did,” said viewer Loretta contribution to FTD awareness.” experience with the disease; his father’s Morash Moskaluk, whose husband had condition declined rapidly, and he PSP and died a year ago. “I find it difficult The show, which first aired in January, died within nine months of diagnosis. to watch, and sometimes I need to walk was recently renewed for a second “Virtually every family story we told away from it. I always cry; it’s so close season. While details have yet to be in season one of Zoey’s Extraordinary to home for me, but I am so thankful announced, both Levy and Winsberg Playlist was based on something that it is bringing have expressed happened in my own house,” he said. awareness to “I could never have anticipated the tremendous interest in outpouring of emails and messages I got,” exploring the “It was very important to me that this terrible said Zoey creator Austin Winsberg. idea of moving the depiction of PSP on the show be disease.” forward after incredibly real and true to my own Winsberg said loss, as well as the origins of Zoey’s experience,” Winsberg added, noting that Gallagher did a “copious amount of musical abilities. that an on-set medical advisor was research” into PSP to help him play the consulted to ensure authenticity. role. He was “so accurate in his depiction The series is available to stream on “Because I had a front row seat to the of someone suffering from PSP that I Hulu and YouTube. 6 The Association for Frontotemporal Degeneration Volume XVII, Issue 2 Summer 2020 Those We Honor... Those We Remember Gifts received from February 1, 2020 –June 30, 2020 In Memory of

James S. Abbott Peter Chase Susan Terry Foley Donald Idecker Stephen E. Maupin Ross Abinanti Jayant Chaudhari Lorraine June Forgey Claud E. Ivie Christine Mazurek Jeffrey E. Abraham JoAnn Chelist Frances Rose Forst Joseph Jarzembowski Ronald McCarthy Lynda Adams Gregory W. Richard Frankel William S. John Scott McCray Stephen Adams Chetwood Charles E. Franklin Peggy Johnson Royce V. McDonald Oscar R. Agmi Beatrice Childs Mimi Oblinger Freeman Brian Jonaitis George Patrick Laura Ahlbeck Chris Clements Bernard Fridovich Terry Jones McGrath Michael P. Alban Lawrence T. Cline Evelyn Friedman Harold Kahn Martin J. McGreevy Lawrence Albert George Coffman Jo-an Kathleen Fultz Marcus R. Kamp Clare McNamara Robin K. Allen Charles Cole Robert Gallagher Amy Barbour Kane William McNamer Elizabeth A. Amend Michael Coletti Robert L. Gallagher Eileen Kaplan Robert Meineke Donna Voss Anderson Gail Colfelt John Gardner Norman I. Katz Robin Mellor Elizabeth Anderson Craig Comstock David Gaudin Nicholas Kavala Ian Miller Gary E. Anderson David Conkle Anne B. Geremia Karen Keller Colby Louise Miller Billy C. Ard Denise Connelly Anthony Giacobbe Thomas J. Kelly Mary Pachter Millman Robert J. Asam Mary P. Copeland John J. Gibbs Alan Klein Alexandra Milmoe Robert M. Ashcraft Maryann M. Corey Sofoclis Glykis Eugene Klein Michael A. Minelli Susan Marie Aubertin James Cosentino Clifford Gocha Lawrence Klein Nancee Modres Mary Guerriero Austrom Rene Crete Howard Gould Scott W. Kluth Brian Monaghan Emerson R. Avery Debra G. Crider David Gragg Joe Kowsky Barbara Monay Harold Axe Edward B. Cybulski Susanne M. Gravelle Fredric Kraver Alfred Moreau Betty J. Bales Virginia L. Shawn Graves Margaret Kronen Susan Churchwell Robert Emerson Beach Dalesandro Dennis Green Diane Kukac Morris Kathleen G. Beal Connie Daniels Harriet Green Robert Kunesh Bob Morrison Joseph Bevivino Frederick J. Davis Gerson Greenburg Connie Kunkle Wilma Mosier Dolores A. Bisgrove Michael Davis Lynette Grieve Mary Ann Lange Ben Mosiman Diana E. Bishop Katie Decker Sandra Griffith Gertrude Broaden Lanns Joseph R. Moulton Sandra Bishop George T. Demkow Wayne A. Gritton Donna Lapsker Steven A. Murphy Deven Black Renee Diamond Karl Grow Sarah Lapsker Mark Nebel Cindy Boehmer Pamela Dircksen Gerald Grzywacz Christa Lawson Sidney Nettles George Warren Booz Roger William Raymond Hamill Arthur Elwood Leathley Peter Norlander Mark Botteon Donnellan Darrel Hansen Maxine O. Leathley Iris Okura Jean M. Bower Carol Lynn Therese M. Harlett Kurt Arlen Legred Diane Osborne Clarke Bowers Dougherty Geoff Harris Sandria Leifer Martin Ottem Dean A. Bowman George Scott Pamela Rose Harvalis Karen Leon Deborah J. Page Sharon Boynton Downing Kevin Harvey Arnette Lester Jackie Pang Anna E. Brackett Kathleen Dreffs Donna Hastings Suzanne J. Levine John J. Pappas Michael T. Brand Catherine Drerup Robert Hatfield Glenn B. Lewis Alexandria Papworth John Brannen Pamela Duncan Darrell D. Hatt Jeff Lewis Kathleen Pelley Phyllis Breuer Ronald Duncan Gregory Hauber John C. Lewis Camilla Perry Catherine Broer Gwenn Dunn Alfred E. Hayes Pat Lewis Joel Petoff Kathryn Brooks Kyle Steven Durkin Auge Hays Gary London Frederick Petrella Donald L. Brown Charlene M. Eckert John M. Headley Kenneth Ludwig Kimberly Phares Barbara Bruggeman Mark Eissler Mark Heberling Donald Lee Mabry Linda D. Phillips John Buonanno Christine Harold Hedaya Patricia Linton Robert Pickett Sheryl Burcher Engelmann Ernestina Hernandez MacFadgen Janis Pitts Charles W. Burger Linda Calvert Georgia Herpel Myra Malacara Judith Poehler Bruce Burgess Eriksen M. Thomas Hester Phyllis Malloy Marlene Poretsky Lawrence Burnetski Amy Evans Garnett E. Hicks Susan P. Marcus Ferdinand Post Nancy Buttorff Peter L. Fabriziani Jody Kay Hill Neville Markens John J. Primeau Ronald Alan Campbell Suzanne Fanning Kenneth E. Hinze Richard Marks Elisabeth Rafloski Lan Pham Cao Karen Fedgo Kenneth Edwin Hinze Rosa Marrero Ronald F. Ralph Cindy Cardosi Karen L. Fedgo Kathleen A. Hirschy Douglas Marsh Kathryn Ranelli Donald Carow Deborah Feindt Jay F. Hoffman Andy L. Martin Kenneth L. Ray Neil Castleberry Michael E. Fenoglio Donald Ray Houlette Marshall Randolph Martin Liane Deere Ray Willis H. Caterson Kathleen Feron Linda K. Hubbard Donna Maser Steven Rebholz Susan R. Caulo Janet Flaccus Joyce Huebner Matthew Sanderson Scott Hayward Reed Bruce L. Chalmers Donald W. Folberth Robert Hunter Matherne Malcolm Reid The Association for Frontotemporal Degeneration Volume XVII, Issue 2 Summer 2020 7

Donations in the name of a loved one bring help and support for families affected today – and hope for a future without FTD.

Mary Lou Reilly Merwin Stroup Deborah Woodcock Scott Forst Greg Pavek Scott Reinewald Karen Sturgis Laura Yanishefsky Ginny Fowler Terry Peetz Pamela J. Richey John M. Sugden Russell F. Yeager Paula Frost Kiem Lee Pham Elaine Richmond James K. Sutter Theodore M. York Terri Kay Garrison Aryeh Portnoy Steve Riedner Wendy Suzman Robert Young Michael H. George Marie Rabago Mark Robinson Deborah Lynn Sweet Christine Youngclaus John K. Gilhooly Lisa Raine Elliott Rodin Robert J. Sykes Jr. Dorothy J. Zajac Earl Gilmore Jan Ramsey Maureen Rose Albert Sylanski Harry R. Zeigler Rosaura Gilmore Alicia Ray Brian Rosequist Marcia Ann Tambellini Julie Marie Joan Gove Karen Reed Carol Rosey Catherine Taylor Dickmeyer Zerhusen Marie Greway Gregory Rively David J. Roth Jackie Taylor Joyce Holmes Ziegler Alice Guiney Sherry Robertson Deanna Careen Rush Judith L. Temple Roy Hamilton Donna Robinson Richard A. Rutherford Randall Thomas Helen Havens Jean Robinson Patricia H. Ryan Caleb Thomas Hodsdon Janet Hawbaker Donna Rose Joanne Sacco Milo Tiefenthaler In Honor of Judy Hayde Lauren Rowans Chelsea Sackel Barbara Tinsley Lydia Adalian Gary Heinz Pierce Rowans Stephen Gary Sackel Clyde K. Tobin Rebecca Adams Victoria Heller Quinn Rowans Eileen Salerno Cynthia Town JoAnne Andrews Beverly Hernandez Kevin Ryan Barry Sandler Karen Traxler Eddie Arwine Mary Hesprich Patrica Ryan Anthony Savona Christopher Morgan Sharon Baldzicki Colleen Terry Hill Carol Sbarboro Trimper Richard Sabol Craig Bancroft Judy Hilliard Rick Schafer David Marshall Scaggs Anne Tryder Gary Hosley David Kevin Schafer Denise Ulloa Bruce Bateman Matthew C. Sheffield Pete Jackson Cindy Schink Robert Unger Trish Bellwoar Paul Siedlecki Jonathan R. Knight Annette Schley Tessa Valladares Dan Berendzen Mary Skok Michelle Kyriacou Alexander Schmidt Scot Van Airsdale Roy Bohr Brant Smith Joyce Langeliers Jeanne Scott Bess Vance The Bora Family Susan Smith Larry Largent Charles Alexander Carla VanDorn Neal Borenstein Stephen J. Smyth Paul Lester Scudder Nayda Veeman Tom P. Breneman Ellen Solomon Robert Lewandowski Steven J. Seitz Daniel Wachspress Andy Bursch Richard B. Stander Lynn Lower Rick Shaheen Randel R. Wagner Sandy Cannon Jeanette Stoothoff Elisabeth Lino Lynch Katherine Shaw Marianne Waldman Susan Castagna Maureen Stroka Randi Mallett Nancy Lee Shillady Beverly L. Walker Tony Castagna Sue Sue Martha Mann Joanne M. Silva Michael G. Wallis Maria Cervoni Susan Marie Sweeney Travis Martin Semahat Sinharoy Steven Walter Su-Ling Chang Jeff Tarkington Jan Materka Susan Skarda James F. Ward Sally Cihos The Staff of the Parker Cathy McDonald James Edward Jane V. Ward Joy Cobb Adult Day Care Program Helen-Ann Comstock Robert McGlaughlin Slaughter Kari Ward Jim R. Tobin David M. Conant Kerry McGreevy Vicky Sprouse Mary Kimberly Ware Barbara Todd John Conner Charlotte McKim Candice Sroczynski Dwight H. Warrington Michael Todd Allison Costantino Landon McLain John Stackhouse Murray Wayne Mr. & Mrs. James Tully Tom A. Cox Jame McLeskey Dawn Ellen Stadler Mary Weflen Karen Turns Jeffrey Stasa Arthur Weidner Ray Cyrus Ann Miller Barbara Walker Robert S. Steel Rosemary Weiten Michael Daigle Daniel Monen Deborah Welshons John Steinhardt Joel Welshons Amanda Dawson Rashelle Morcom Melissa Wettstein Thomas H. Stevens William K. Werth Thomas J. Dury Mark Moriarty Jerry Wiggins Susan Stevenson Barbara Whitmarsh Steven A. Edwards Tara Winslow Morr Judy Windhorst Jeanne Stolier Terryl Wilharm Judith Erlick Charlotte Murray Women of the ECLA - Seymour Stony Ethelanne Wilhem William Farley Hall Newbegin Eve Circle Sarokin Douglas Albert Williams Bill Fehon Donald Newhouse Joel Storch Moyese Williams Jim Fiori Rhoda M. Oswald Kenneth Wood Rich Strizki Edwin Wilson Diane Fitzgerald Bill Ott Tsippi Wray Mike Strohm Robert Steven Winters Zandra Flemister Faith Ott Karen Zander

Honor a Loved One or Remember Their Legacy Families wishing to direct memorial donations to AFTD are encouraged to call our office at (267) 514-7221. AFTD can mail you donation materials, or you can download them from our website. All donors will receive letters of acknowledgment, and families will also receive a list of donors. To contribute online, visit www.theaftd.org and select “Donate+” 8 The Association for Frontotemporal Degeneration Volume XVII, Issue 2 Summer 2020 Giving a Hand to Our Helping Hands! AFTD Ambassador Susan Meagher “Everyone’s FTD journey is different,” But after the pandemic hit, Susan – like information on Virtual Meet & Greets.) AFTD Ambassador Susan Meagher everyone else – found herself having to “My goal was to let people facing FTD in recently said. “If you are one of the adjust her strategies in an ever-evolving Montana know that they’re not alone,” she primary caregivers, your opportunity to said. One important way to do that, she volunteer with AFTD may not come until said, was to share AFTD’s resources with after that part of the journey is over.” them, including the AFTD website and its numerous publications and newsletters. Like her sister and fellow AFTD Ambassador Joanne Linerud, Susan did But, she added, “the next step is knowing not become an AFTD volunteer until after that there’s someone in your area that their mother died of ALS-FTD in 2016. “We you can call up – that’s really, really knew just how lonely the journey can feel,” important.” For someone with FTD in Susan said. “The way we felt supported by their life, talking to someone who has AFTD – we wanted to support others in lived similar experiences and is familiar with the same terminology can seem the same way and pay it forward.” Susan Meagher and her sister, Joanne Linerud, both AFTD Ambassadors surreal, particularly after years of Encouraged by Joanne, Susan began her confusion in the lead-up to a diagnosis. current Ambassador role in early 2020. new reality. “I’ve definitely had to shift Overall, Susan says she is proud to Like other Ambassadors, her goals were my process as far as reaching out to represent AFTD as a volunteer. “I’m to speak publicly about AFTD, conduct medical professionals and spreading grateful that AFTD has put faith in me outreach and provide FTD information to awareness,” she said. local health providers. She was especially to help other people,” she said. “Allowing eager to make connections with people In July, Susan hosted a Virtual Meet & people who have had FTD in their lives to who live in her local community in Greet – a Zoom-based version of the speak in the name of AFTD – there’s a lot Montana. “I’m not afraid to put myself out popular AFTD volunteer activity, adapted of trust involved in that, and it feels very there and say, ‘Hey, AFTD’s awesome.’” for the COVID era. (See page 9 for more empowering.” 600+ Attend 2020 Education Conference Online More than 600 people “attended” AFTD’s Corey Esannason presented “Self Care, progressive aphasia (PPA), presents a talk 2020 Education Conference, which, due Mindfulness and Remaining Positive.” about the concept of “building a toolbox to the coronavirus pandemic, was held She modeled useful breathing and for FTD” – compiling aspects of FTD care as a series of webinars over the course movement techniques that can bring that are person-centered, promote the of a month. calm and focus to an increasingly dignity of the person diagnosed, and allow uncertain time. them to live their best lives. Between April 7 and May 7, AFTD presented five webinars designed to Finally, in “Building a Future Free of FTD: All told, 634 unique viewers found help and help families better manage the FTD AFTD’s Mission in a Changing World,” shared hope by watching at least one of the journey during the unique and difficult Dickinson and AFTD Board Chair David AFTD Education Conference webinars. circumstances presented by COVID-19. Pfeifer share highlights from the past All told, 634 unique viewers found help year of AFTD’s work and present its AFTD CEO Susan L-J Dickinson spoke and shared hope by watching at least vision for the future. with Bruce Miller, MD, director of the one of the AFTD Education Conference University of California, San Francisco Originally scheduled to be held in Baltimore webinars. Memory and Aging Center, for the on April 17, the in-person AFTD Education The webinar series began on April 7 with third webinar, “Ask the Expert: FTD Conference was canceled in early March, “Coordinating & Managing FTD Care in a and COVID-19.” Dr. Miller, who is also as the country began to gradually shut Changing World.” Jennifer Pilcher, PhD, a member of AFTD’s Medical Advisory down due to coronavirus concerns. founder of the healthcare consultation Council, discusses how the two diseases All five webinars in the series are available group Clear Guidance, discussed ways intersect, and talks about the latest to view at www.theaftd.org/aftds-2020- to manage an FTD diagnosis during a advances in FTD research. education-conference-webinar-series. For time of rapid and significant change. In “The Playlist of My Life,” the Very Rev. a full list of conference sponsors, consult The following week, AFTD Ambassador Tracey Lind, who is living with primary the Spring 2020 issue of AFTD News. The Association for Frontotemporal Degeneration Volume XVII, Issue 2 Summer 2020 9 Making a Difference During COVID-19 During these challenging and • Participate in AFTD’s Annual Food 1) AFTD will prioritize virtual volunteer uncertain times, AFTD is extremely for Thought fundraising campaign activities until safer conditions become grateful for the steadfast commitment • Join Charity Miles and raise FTD more widespread. of our volunteers across the country. awareness and funds with every step We believe virtual volunteer activities are As the COVID-19 pandemic continues, you take the safest and best option in the current we know many of our volunteers are • Share your story on your Facebook uncertain environment. They can also anxious to resume their efforts to page and through your social media have the added benefit of opening up new help advance our mission and make accounts opportunities for connection, support, an impact. and awareness. It is important to acknowledge Whether you are considering gearing that even as different parts of the 2) Face-to-face volunteer activities and back up to volunteer again, or you country move towards reopening, events may be feasible in some situations. want to get involved by volunteering the trajectory of the pandemic is In a changing environment, there will for the first time, there are ways uncertain, and a risk still remains. be circumstances in which AFTD will be you can help make a difference in Caregivers and people with FTD may promoting small in-person events and today’s ever-changing environment. face higher risk for COVID-19 infection, volunteer opportunities. In-person events Whatever activity you choose, AFTD and/or developing complications if and volunteer opportunities should only staff will provide you with support infected. The stress of caregiving can move forward if local, state and federal and guidance every step of the way. weaken immunity, and for persons guidelines permit, and if risk can be The following are some of the ways diagnosed, FTD symptoms may make mitigated for the volunteer, their family you can help as a volunteer: maintaining recommended hygiene and the activity participants. guidance especially difficult. • Facilitate a phone or virtual support If you would like to learn more about the group for caregivers Following is some guidance on how volunteer opportunities listed above and • Plan and host a Virtual Meet & Greet we will be leading and coordinating how best to conduct them safely, please with local families affected by FTD volunteer activities in the months contact your Volunteer Coordinator or (see below) ahead: email us at [email protected].

Take Action Today: Host a Virtual Meet & Greet In response to COVID-19, AFTD has All that volunteers need to host this now,” says Annamarie Given, AFTD developed a new volunteer activity to event are a computer and a webcam. Volunteer Coordinator. “Our hope in keep people Virtual Meet & Greets allow attendees to AFTD developing Virtual Meet & Greets is in the FTD share their stories, learn about AFTD and its will work to provide a meaningful, rewarding, closely with and positive experience for our community programs, and discover how to get involved. connected volunteers as volunteers that also encourages while remaining at home: Virtual they plan their Virtual Meet & Greets, connection with others. We would Meet & Greets. During a time when offering two new love to see Virtual the isolation common to FTD may training tools and Meet & Greets hit harder than ever, the flexibility providing support continue and remote nature of this new every step of the alongside our activity will provide a vital space for way. AFTD looks other volunteer all those affected to come together. forward to our activities.” compassionate volunteers To learn more Virtual Meet & Greets are informal hosting Virtual about how to host gatherings facilitated through Zoom, Meet & Greets! a Virtual Meet a free web-based video conferencing & Greet, please platform. They offer a safe space for “Amid social contact volunteer@ members of our community to share distancing and theaftd.org and their stories and local resources, much of the population staying your Volunteer Coordinator will learn about AFTD and its programs, at home, connecting with others reach out to schedule a time to talk and discover how to get involved. feels especially important right through next steps. 10 The Association for Frontotemporal Degeneration Volume XVII, Issue 2 Summer 2020

Prior to the COVID-19 pandemic, the AFTD-Team was able to meet for the Austin Marathon weekend in February. This year marked the second year that AFTD has been an Official Charity Team of the Race marathon, and it was another success! We had 29 members of our community, plus a few members of the AFTD staff, run and walk together to help spread critical FTD awareness throughout the streets Season of Austin. In addition, AFTD-Team members raised over $5,550 through the weekend’s efforts. We would like to acknowledge and thank the AFTD-Team members who went the extra mile and fundraised for AFTD: Kacy Kunesh Stacey Fletcher Steven Long Kristin Schaffer Stephanie Grasso

Remembering Tom: Jacquelyn Colorway for a Cause: Breneman, of Michigan, created a fundraising page in Kristen Gillette, owner of Peg & Jane memory of her father, Tom P. Breneman, who passed Yarn Co., hosted a Colorway for a Cause away in June. Tom was 61 years old when he passed fundraiser where 10% of sales of all and had been fighting a multi-year battle with FTD. products between mid-February to mid- In lieu of flowers, the Brenemans asked their family April went towards AFTD’s mission. This and friends to send memorial donations to AFTD. was in honor of her friend, Larry Largent, Through the fundraising page, the family raised $5,920 who was diagnosed with FTD in 2018. The A colorway from Kristin Gillette’s Colorway for a to support AFTD’s work. two met in college back in 2007. The new Cause fundraiser colorway that Kristen designed is based off of Hatteras Island, off the coast of North Carolina, a special Tee-rific Time: The Robert M. Hatfield place to Larry, his wife Erica, and their three daughters. Foundation hosted the Ninth Annual Quest for the Cure Golf Tournament at the Bardmoor Golf & Tennis Club in Florida. This year’s event raised $5,250, increasing Spring Bling Fling: their total tournament giving history to $63,150 Corey Compa, an employee at Artis donated to AFTD’s mission. Senior Living Center in Huntingdon Valley, PA, helped to host a Spring Bling Fling event to raise funds and Crossing the Finish: Brian Strohm, awareness for AFTD’s mission. The of Kansas City, MO, was set to run the Rock the event included shopping new and Parkway Half Marathon & 5K on Saturday, April 4 in gently used jewelry, accessories, his hometown, until the event was rescheduled due handbags, and tchotchkes. The senior to COVID-19. Prior to the date changes, he was able living center has a population of residents diagnosed with FTD, who to raise $1,490 for AFTD’s mission and is now looking A flyer promoting Corey forward to running the race on a future date. Compa’s Spring Bling Fling were able to attend the event as well. The Association for Frontotemporal Degeneration Volume XVII, Issue 2 Summer 2020 11

Charity Miles In response to the COVID-19 pandemic, and to offer our provide critical guidance, resources, and assistance to so many community a safe way to foster connection and support on the FTD journey. AFTD’s mission during this time, we have partnered with the Charity Miles app. This free smart phone app allows Additionally, our AFTD-Team was able to raise more awareness users to track their miles moved, turning workouts into a and funds in July when we announced our sponsorship with fundraiser for AFTD. Alector, Inc. Every mile that a community member logged on our behalf, Alector matched $1/mile up to 20,000 miles. In just 22 Since we began this initiative in April, our community days, our Charity Miles athletes achieved our July goal to help has shown great dedication, support, and commitment secure $20,000! to helping us raise awareness and funds during such a critical time for our work. AFTD thanks Alector for their generous donation, which will advance AFTD’s mission – bringing help and support to improve In the first two months on the app, our AFTD runners, the quality of life for people affected by FTD and driving research walkers, and bikers were sponsored by the Mike Walter to a cure. Catalyst Fund—for every mile a member completed, the Fund donated $1 designated towards support programs To all our walkers, runners, and bikers logging miles on the Charity and grants. Thanks to all who participated in April and Miles app, thank you for your continued support through this initiative! May, the AFTD-Team was able to raise over $47,000 to

Maggie Sepesy from Nebraska joined the AFTD- Team to honor and remember her mom, who passed away in February. She shares, “My hope is that these fundraising dollars and all the initiatives will help so one day no one will have to endure what my mom or family went through.”

Norma Morrison from Iowa walks and bikes to honor her husband Bob who passed away from FTD. She shares, “I’m so grateful that Charity Miles has given us the opportunity to support AFTD financially through an activity Bob and I so loved to do together.”

Jorge Rodriguez from California joined the app to make a difference in the greater community: “I chose to run and hike for AFTD’s mission because of the great impact I can have on someone’s life.”

Daniel Hare from Nebraska runs and bikes for AFTD’s mission to “raise funds and awareness to honor and support those AFTD Ambassador Melissa Fisher from that have or currently are battling FTD,” and Oregon is inspired by everyone on the hopes that his efforts will “result in others AFTD-Team and shares: “I’ve vowed to raise being able to defeat the disease, restoring awareness and funds for this organization their health and well-being.” that gives all of us hope and so much help.” Prsrt. Std. U.S. Postage PAID Williamsport, PA Permit #33 2700 Horizon Drive, Suite 120 King of Prussia, PA 19406 www.theaftd.org

If you prefer to receive this newsletter via email or would like to be removed from our mailing list, email [email protected] or call 866-507-7222. AFTD www.theaftd.org phone: 267.514.7221 toll-free phone: 866.507.7222 Board of Directors Medical Advisory Council David Pfeifer Gail Andersen Kacy Kunesh Ohio Texas Chair, Colorado Ian R.A. Mackenzie, M.D. Walter A. Kukull, Ph.D. Rick Childs Jary Larsen, Ph.D. Chair, University of British University of Washington Stephen Fenoglio Massachusetts California Columbia, Vancouver Vice Chair, Texas Virginia M.-Y. Lee, Ph.D. Sandra Grow Kathy Mele Bradford C. Dickerson, M.D. University of Pennsylvania Brian Rose Ohio New York Chair Elect, Harvard University Treasurer, New York Matt Hatfield Michael Stowell, Ph.D. Carol F. Lippa, M.D. Florida Colorado Thomas Jefferson University Kimberly Pang Torres Bradley F. Boeve, M.D. Daniel Hedaya Beth Walter Mayo Clinic, Rochester Recording Secretary, New Jersey California Irene Litvan, M.D. New York University of California, San Diego Helen-Ann Comstock Dennis W. Dickson, M.D. Kristin Holloway Mayo Clinic, Jacksonville Founder, Pennsylvania California Mario Mendez, M.D., Ph.D. Karen Duff, Ph.D. UCLA University College London Staff M.-Marsel Mesulam, M.D. Northwestern University Ann Schoonover, M.S.W., L.S.W. Howard Feldman, M.D. Susan L-J Dickinson, M.S. Bridget Moran-McCabe, M.P.H. University of California, San Diego Chief Executive Officer Support Services Manager HelpLine Advisor Bruce L. Miller, M.D. Sharon S. Denny, M.A. Debra Niehoff, Ph.D. Brittany Andrews Bernardino Ghetti, M.D. UCSF Senior Director of Programs Research Manager Fundraising Coordinator Indiana University Jill Murrell, Ph.D. Ben C. Freeman Matt Ozga Jeni Cardosi Jill Goldman, M.S. Indiana University Development & Communications Manager Volunteer Coordinator Columbia University Communications Director Chiadi Onyike, M.D. Matthew Sharp, M.S.S. Annamarie Given Johns Hopkins University Christine Stevens, M.B.A. Program Manager Volunteer Coordinator Murray Grossman, M.D., Ed.D. Chief Financial Officer University of Pennsylvania Creighton Phelps, Ph.D. Deena Chisholm, M.P.H. Jeff Thompson Emma Tomasetti Education Program Manager Office Manager Development Coordinator Edward Huey, M.D. Columbia University Rosa Rademakers, Ph.D. Bridget Graham Lauren Gauthier Emily Bradley University of Antwerp Development Assistant Special Events Manager Online Community Specialist Michael Hutton, Ph.D. Howard Rosen, M.D. Kerri Keane, M.S.W. Victoria Addison April Scott Eli Lilly & Co. UK UCSF Volunteer Manager Digital Content Writer Administrative Assistant David S. Knopman, M.D. John Q. Trojanowski, M.D., Ph.D. Amanda Knight Elizabeth Graham Elizabeth R. Young Mayo Clinic, Rochester University of Pennsylvania Development Manager Development Writer Executive Assistant For permission to reprint articles, please contact [email protected] or call 267-514-7221.

AFTD is a non-profit, 501(c)(3), charitable organization. A copy of AFTD’s official registration and financial information may be obtained from the PA Department of State by calling toll free within Pennsylvania, 1-800-732-0999. Registration does not imply endorsement.