Volume XVIII, Issue 2 Summer 2021

AFTD’s 2021 Education Conference Offers Resources, Support, Hope AFTD’s 2021 Education Conference, held on the Culture of Dementia Care.” May 13 and May 14, took place entirely online, with more than 1,200 registrants from around Dr. Powell, the director of the Montefiore the world taking the opportunity to find help Einstein Center for Bioethics at the Albert and share hope. Einstein College of Medicine, spoke about steps necessary to deliver For those unable Find help and share hope online: Most of the sessions the most efficient, to watch the from AFTD’s 2021 Education Conference are available to high-quality care to conference live, watch at aftdconference.org. persons diagnosed, most sessions emphasizing the from this year’s need to adequately Education Conference were recorded and train, support, and compensate professionals can be viewed at aftdconference.org. who provide dementia care.

Dr. Tia Powell, author of Dementia “The pay for people [working] in dementia Reimagined: Building a Life of Joy and Dignity is poor,” she said. “At the same time, there’s from Beginning to End, opened the Education a growing need. There are more and more Conference with her session, “Transforming people, not fewer, getting dementia.” (Continued on page 4)

INSIDE THIS ISSUE

Spotlight on... ALLFTD Study Recruiting Rita Choula...... 2 Participants to Help Further News Briefs...... 2 Understanding of FTD Summer Appeal...... 3 ALLFTD, the North American consortium of Rosen of the University of , San FTD-focused research centers, is recruiting Francisco (UCSF). Drs. Boeve and Rosen Education Conference...... 4 participants in a longitudinal study that are members of AFTD’s Medical Advisory aims to examine how FTD progresses and New AFTD Grants...... 5 Council. presents itself over the long term to better prepare for clinical trials. Donations...... 6-7 Launched in 2020, ALLFTD combines two FTD-focused More participation will allow researchers to better Funded by the research studies: Global Conversation on FTD..8 understand the natural FTD history, develop National Institutes Advancing biomarkers, and create an FTD clinical trial network. NYS Advocacy Day...... 8 of Health, ALLFTD Research and comprises 18 site Treatment for Helping Hands...... 9 centers that enroll persons diagnosed Frontotemporal Lobar Degeneration with a variety of FTD-related disorders (ARTFL) and Longitudinal Evaluation of Volunteers...... 9 and syndromes. The cooperative study is Familial Frontotemporal Dementia Subjects co-directed by Dr. Brad Boeve of the Mayo (LEFFTDS). The AFTD-Team...... 10-11 Clinic and Drs. Adam Boxer and Howard (Continued on page 5) 2 The Association for Frontotemporal Degeneration Volume XVIII, Issue 2 Summer 2021 Spotlight on…Rita Choula, AFTD Board of Directors

Before Rita Choula’s mother died diagnosed Bryant with Alzheimer’s. not ignore. “This is a passion for me, last October following a decade- But Choula, Director of Caregiving at to be able to turn and give back so plus journey with the AARP Public Policy that [other families] don’t have to behavioral variant Institute in , walk down that same journey – or FTD last year, she told D.C., knew enough that journey doesn’t have to be as her daughter to do about the disease and its difficult as mine was.” two things: be bold symptoms to question and take risks. Choula that assessment. Bryant She also aspires to continue says that her mother’s was finally diagnosed conversations that center the advice will guide her with bvFTD at age 60, and perspectives and experiences of tenure on the AFTD died at 72. Black, Indigenous, and people of color Board, which began (BIPOC) and other underrepresented The family’s inability identities among the community earlier this year. Rita Choula to get an accurate AFTD serves. “That [advice] is so applicable to the early diagnosis “took away a lot of work we are doing at AFTD,” Choula opportunity for us to just be with her,” “It’s about elevating BIPOC leaders said. “AFTD is a small – but powerful Choula said. “So much of our journey within these caregiving communities and mighty – organization. and engaging with diverse I [couldn’t] turn away from Working with fellow AFTD Board members “is a passion for professional organizations this. I can’t have walked me, to be able to turn and give back so that other families to make sure they’re aware this journey and have gone don’t have to walk down that same journey.” and are able to send their through what my family messages out,” Choula said. “I went through to turn my back and was me figuring it out and having to want to continue sharing the stories say, ‘it’s over.’” educate professionals on it.” of diverse individuals and families that are living with FTD. If we don’t Choula said that she is motivated to Reflecting on her personal and know certain things, we don’t know help further AFTD’s mission due to her professional experiences in dementia how to engage. If we’re asking people family’s struggle to obtain a correct caregiving, Choula said that the to share their story and we want diagnosis for her mother, Theresa chance to join AFTD’s Board is an to develop and build a welcoming Bryant. Neurologists originally “opportunity and a calling” she could family, we have to welcome all.”

AFTD News Briefs

AFTD to Begin Strategic-Planning Process AFTD Welcomes New Ambassadors AFTD staff and Board have begun the process that will In December 2019, AFTD launched a new volunteer leadership result in a new organizational Strategic Plan, which position: AFTD Ambassadors, who represent AFTD within will guide AFTD’s work and establish our priorities a defined geographic area, working to raise awareness, beginning in July 2022. Numerous stakeholders and educate, and build connections at the local level. For the experts, many of whom have lived experience of FTD, first time since establishing this role, the Ambassador team will contribute to its development. The most recent is expanding! Our newest Ambassadors are Dr. Jerry Lazarus AFTD Strategic Plan, which took effect in January (NC), Dawn Ducca (MI), Marc Toles (MI), Dawn O’Gara (MA) 2019, has lent clarity to AFTD’s work in our mission to and Susan Eissler (TX). AFTD’s Ambassador team now totals improve the quality of life of people affected by FTD 14 dedicated individuals across 12 states. We are grateful to and drive research to a cure; it is available to download all our Ambassadors for their time, energy, leadership, and under the About Us tab on theaftd.org. commitment to supporting AFTD’s mission. The Association for Frontotemporal Degeneration Volume XVIII, Issue 2 Summer 2021 3 4 The Association for Frontotemporal Degeneration Volume XVIII, Issue 2 Summer 2021

Education Conference (Continued from page 1) Dr. Adam Staffaroni, a FTD and Young-Onset Dementias need to understand the geographic neuropsychologist at the Clinic at Johns Hopkins University distribution of syndromes as University of California San (and a member of AFTD’s Medical well as the larger population and Francisco’s Memory and Aging Advisory Council). Dr. Onyike’s genetic risk factors; that’s going to Center, used his session to provide presentation, entitled “Cultural be crucial for screening.” “Updates on Major FTD Research Perspectives in FTD,” summarized Initiatives.” He talked about why emerging efforts to understand The Education Conference natural-history studies of FTD, FTD across global geography and featured 18 sessions, including four such as ALLFTD, are so important diverse cultures, and the many breakout sessions on each day, for understanding how the disease challenges in this work. with over 30 speakers total. AFTD’s progresses over time, and for recently chartered Persons helping to shape (and recruiting A wide range of leading FTD experts and with FTD Advisory Council led potential participants for) researchers provided a global audience with two sessions. The conference treatment trials. the latest information and resources. also encouraged audience participation via live, interactive Additional featured speakers To effectively ensure that all polls, Q&As, and community chat included Dr. Elizabeth Finger impacted by FTD receive the sessions. of Western University, who diagnoses and care they need, Dr. discussed emerging and current Onyike said, “we need language Visit aftdconference.org to watch FTD clinical trials, as well as Dr. and cultural translations of clinical select sessions from the Education Chiadi Onyike, director of the measures to make that happen. We Conference. The Association for Frontotemporal Degeneration Volume XVIII, Issue 2 Summer 2021 5 AFTD Announces New Drug Discovery Grant and Postdoctoral Fellowship Recipients AFTD has recently announced new professor of neuroscience at Cornell represent the earliest signs of the FTD awards supporting research to advance University, will work to improve a group disease process. Building on work carried the science of FTD and, hopefully, of compounds developed by her team out by former AFTD Postdoctoral Fellow hasten a future free of this disease. that block free radicals that can trigger Dr. Ming-Yuan Su, Dr. Shin will devise protein accumulation and inflammation strategies for the development of drugs Since 2007, AFTD and the Alzheimer’s in brain cells – a potentially promising that restore normal lysosome function Drug Discovery Foundation have new approach to treating FTD. in C9orf72-associated FTD. Finally, Dr. partnered to fund the Nolan will use gene editing, stem cells, Accelerating Drug Discovery New AFTD-funded research points to promising and animal models to advance our in FTD grant program, which new approaches to treating the disease, as well as understanding of the role of RNA supports preclinical research on detecting it early in the disease process. binding proteins in FTD, and seek promising new or repurposed to identify and evaluate new drugs drugs to treat FTD. For 2020, the as potential treatments for TDP-43– recipients of the Accelerating Drug AFTD has also awarded three 2021-2023 associated FTD. Discovery for FTD awards are Wen- Holloway Postdoctoral Fellowships. The Hsuan Chang, PhD, and Anna Orr, PhD. recipients are Daniel Okobi, MD, PhD, For over a decade, AFTD Postdoctoral of UCLA; Hijai Regina Shin, PhD, of the Fellowships have funded the next Dr. Chang, the Head of Research for University of California, Berkeley; and generation of FTD researchers during AcuraStem Incorporated, a California- Matthew Nolan, PhD, of the critical final phase of their training. based biotechnology company, will General Hospital. Thanks to generous support from the test to see whether blocking a specific Holloway Family Fund, established enzyme will increase the clearance of Dr. Okobi will use miniature microscopes earlier this year by AFTD Board member damaged or misshapen proteins, such as implanted in the brains of mice with Kristin Holloway, AFTD has updated and tau and TDP-43, to prevent them from an FTD-associated mutation to image expand this program, demonstrating our accumulating and potentially causing brain pathways in the animals, allowing commitment to maintaining the pipeline FTD. Meanwhile, Dr. Orr, an assistant him to detect subtle abnormalities that of promising early-career investigators.

ALLFTD Study Recruiting (Continued from page 1) Dr. Adam Staffaroni, a neuropsychologist The study’s recruitment plan is split this arm will also have their blood drawn, at UCSF’s Memory and Aging Center, into a longitudinal arm and a biofluid- undergo neurologic examination, and provided updates on ALLFTD’s progress focused arm. The former aims to complete questionnaires. during AFTD’s 2021 Education Conference enroll 1,100 participants. Participants Enrollees in the longitudinal arm of that took place in May. While ALLFTD has and a study partner will go to their the study will be able to use the new succeeded in its initial efforts in enrolling designated site for two to four visits ALLFTD mobile app to submit data. participants, researchers are looking to per year. Participation includes getting Participants will also be able to answer increase involvement in the questionnaires via the app; study, Dr. Staffaroni said. (The Participants will also be able to answer questionnaires via take cognitive, motor, and FTD Disorders Registry is a the new ALLFTD app; take cognitive, motor, and language language assessments; and partner to ALLFTD, supporting assessments; and submit speech and language samples. submit speech and language recruitment and remote data samples. collection.) blood drawn, undergoing neurologic examinations, a brain MRI, and “The app will provide us with additional The COVID-19 pandemic impacted completing questionnaires. data that can’t be captured in a typical ALLFTD’s recruitment, slowing new annual visit,” Dr. Staffaroni said. “By enrollment and reducing in-person The biofluid-focused arm of the being able to administer these tests more evaluations. A gradual easing of ALLFTD study, which is seeking 1,000 frequently, we’re going to get a more restrictions has allowed researchers to participants, allows for enrollees reliable estimate. We think [it will] help us resume their efforts. More participation to complete their participation in a be more sensitive to the earliest changes allows investigators to understand the single visit to a research site. It will of the disease and allow us to collect some natural FTD history, develop biomarkers primarily consist of symptomatic FTD novel information, like step count.” for diagnosis and prediction, identify new participants, although asymptomatic genes and mutations associated with FTD, family members will be considered on Visit allftd.org to learn how to participate and create an FTD clinical trial network. a case-by-case basis. Participants in in the ALLFTD study. 6 The Association for Frontotemporal Degeneration Volume XVIII, Issue 2 Summer 2021 Those We Honor... Those We Remember Gifts received from February 1, 2021 – June 30, 2021 In Memory of

James S. Abbott Beatrice Childs Patricia Ann Fitzgerald Jeanne M. Hogan Patricia K. Marino Janet Parsons Maryann Cassello Abbott Michele Chollet Barry Flowers Bernie Holtzman Neville Markens Len Partusch Ross Abinanti Ed Clemens Susan Terry Foley Mary Patricia Honeyfield Joseph P. Martin Paul Payne Lynda Adams Donald Clement Lorraine June Forgey Gary Hosley Marshall Randolph Martin Sheryl Perri Rebecca Ann Adams Lawrence T. Cline Paula Fornara James Howard June Marie Massarella Camilla Perry Sharon Baker Adams Mindy Cohen Frances Rose Forst Michael Howie Elaine F. Matthews Kimberly Phares Bonnie Ades Karen Keller Colby Calvin LeRoy Fox Linda K. Hubbard Robert Matusiak Kathy Pirtle Laura Ahlbeck Charles Cole Norman Fox Joyce Huebner Norman Matz Janis Pitts Bill Allen Daniel Channing Cole James Framstad Pamela Hughes Ralph D. May JoElla Platt Edward Glen Allen Michael J. Coletti Marsha Francisco Andrea Sachse Hurwitz Larry Mayall Steven M. Plotkin Jerry W. Allen Gail Colfelt Charles E. Franklin Linda Hutmacher Heather Maynard Daryl F. Pokrana Robin K. Allen Chris Colvin Karen Freeman Charles Ice Edward James McAndrew David W. Price Scott Anctil Phyllis J. Comery Mimi Oblinger Freeman Claud E. Ivie Ronald McCarthy Stan Primak David Anderson Craig Comstock Dixie French Mary Ellen Jamison Anita McCarty Johnny “Thunder” JoAnne Andrews Stephen Conneally Monica Y. Fried Shirley Jeffries Martin J. McGreevy Primeau Maeja Aqua James Cosentino Keith Friedrichs William S. Jeremiah Evelyn McGuire James C. Purvis Ronald Aqua Robert H. Cramer Larry D. Friesen Thomas R. Jerrells James Rowland McLean Sheila Quincey Billy C. Ard Charles E. Cummins Sam Frost Valentina Jesionek Clare McNamara Carol Radtke Emerson R. Avery Edward B. Cybulski Margaret Fry William S. John Darrell McSloy Shirley Radtke Harold Axe Connie Daniels Kazimierz Gajek Joanne Johnson Judith Ann Messerli William Rafferty William F. Babcock Van Daniels Mary Monica Garber Mark W. Johnson Ellie Meyers Ronald F. Ralph Barbara Baggs Justin Davenport Joseph Garda Robert N. Johnson Charles Micchelli Carol Rao Thelma Bagley Ann Cockrell Davis Kevin Garner Carrie Jouflas Ann Charles Miller Liane D. Ray Craig Michael Bancroft Earnest Don Davis Terri Kay Garrison Lydia Kao Melville Miller Raymond Reaves Joan Bannworth Fred Davis Richard Gautreaux Eileen Kaplan Merilyn Miller Scott Hayward Reed Cecilia Barich Frederick J. Davis Jim Geddings James Clement Kearney Phyllis Miller Paul T. Reeve Bette Basilevsky Riley Clifton Davis Rudy Gehrig Amalia Kent Jimi Millerleile Elaine Richmond Barbara Basla Charlotte A. DeBurger Michael H. George David V. King Paul Minetti James Ridley Jerry M. Baston Michael DeFatta Julie Gerow Carole D. Kipp Barbara Monay Sharon Robbins Caroline D. Bell Kathryn Denny Joann Gismondi Alan Klein Robert A. Monk Rick Roberts Joseph C. Bennett Renee Diamond Ted Godfrey Peter Kohudic Carl Moretti Russell Robertson Cathy Berger Axel Dikkers Cindy Goetz Donna Kokolis Carol A. Morris Donna Robinson Dolores Bernstein Carole A. Dillon David Goins Otto Kostka Charles E. Moses Laura Robinson Paul Berte Joseph D. Dillon Malcolm Goldsmith Margaret Kozik Tolula E. Mosier Elsie Rodgers Dolores A. Bisgrove Pamela Dircksen Elaine Goldstein John Kretekos Sheldon Moskovitz Sarah C. Rogers Sandra Bishop Scott A. Dirk Mary Grassinger Brian Kuehner Maureen Mroczka Joseph A. Rokita JoAnn Bisti Todd Michael Dolan Shawn Graves Gloria J. Kukurin Charlotte Murray Jack Roof David Blank Roger William Donnellan David Gray Peter Kurz Eileen Murray Michael Root John D. Blossom, III Stephen P. Donnellan James Brian Green Diane Kyle Gayle Lonergan Murray Maureen Rose Joanne Bobek Dorothy Donovan Susan Grengs Christopher Lane Susan Murray Brian Rosequist Cindy Boehmer John J. Donovan Patricia Griffin Mary Ann Lange Randy Myer Carol Rosey Nora G. Bomke George Scott Downing Karl Grow Dale M. Larson Mark Nebel Henry Roth Kimberly Booten Aaron Dubin Alice Guiney Charles R. Lawrence Lynne S. Neft Tim Rowans Joy Spartin Bowen Martin Timothy Duhig Mary Gutierrez Patricia LeBlanc Sharon Neiderhaus Valri Jean Ruenz Clarke Bowers Larry Duncan John Guttmann Karen Leon Donna Nelson Renee Rutkowski Dean A. Bowman Ronald Duncan Roy Eugene Guy Arnette Lester William H. Neveker Patricia H. Ryan Daniel Boyd Janet Dunne Nelson R. Hall John S. Letinski Susan Newhouse Marty Sabraw Bryon Brethet Kyle S. Durkin Darrel Hansen Elliot Levine Marie Annette Nichols Stephen Gary Sackel Julie Bromann Amanda Lee Dyke Michael C. Hansen Suzanne J. Levine Inez M. Nielsen Karen Saksa Sylvia McDaniel Brooks Carole Edelman Theresa Hansen Donna Levy Lonnie Dean Nielsen Robert C. San Jule Suzanne J. Broudy Mannie Edelstein Therese M. Harlett Gisele Levy-Rautenstein Dorothy Norman Janet Sapadin Nancy Brown Gail Edwards Nancy L. Harshe Deborah E. Lewis Scott Norman Seymour Stony Sarokin Peedee Brown Mary Einhorn Mary Lynn Hartsock Kathy Lewis Lorraine Nunez Carol Sbarboro Robert Bruder Mark Eissler Kevin Harvey Sheryl Linden Michael Oakley David K. Schafer James Buckley David Elliott Fred Haslee Carlos Mario López Lira Kathleen O’Brien Jacqueline Schneider Frank Buczek Denise Elson Donna Hastings George Lodenquai Gidget O’Connell Thomas A. Cynthia Burgess Richard Engborg Darrell D. Hatt Gary London John O’Connor Schoeneberger David Byrne Frank Engelkraut Rebecca Hawley Donald Long Steven L. Odaffer Sue Schreiner Benjamin Cannon Christine Engelmann John M. Headley Thomas G. Luken Kevin O’Halloran Glenn Schweers Mikel J. Cannon Mary Jo Enneking Jodi S. Hecht Gregory W. Lundstrom Lawrence Carl Olivieri Stephen A. Scott Cindy Cardosi Terry Erdman Harold Hedaya Jean E. Lundy Pamela Sepple Olson Charles Alexander Peter G. Carey Linda Calvert Eriksen John D. Heizman Patricia Linton Timothy L. O’Neal Scudder Kevin Carpenter Charles Ermisch Victoria Heller MacFadgen Jeff Ormes Benjamin Hugh Selph Robert C. Carter Sharon Ermisch Clayton W. Henderson Robert A. MacFadgen Diane Osborne Kelly Sepelak John Caruso Heitor Luiz Espinola Randy Hendrickson Chuck MacIlvaine Marlene Ostafin Michael Setlow Willis H. Caterson Nabil Fares Sheila Herman Robert Mackenzie Rhoda M. Oswald Deborah Sexton Nancy Wheeler Chandler Michael Ray Faulkner Robert L. Hermann John Mackey Valerie Gilbert Ottman Lundy Seymour Jeremy Chaney Harold Fechtner Herpel Bernard Maguire Howard W. Owen Angela Sharpe-Dotson Richard Christian Chapman Bill Fehon Mary Hesprich Robert Malpede Douglas Owens Louise Jeffress Shaw Robert Charles Michael E. Fenoglio Julia L. Hilliard Phyllis Mankowitz Deborah J. Page Cheryl J. Sherman Cynthia P. Chiavacci Ina Fenske Kenneth E. Hinze Susan P. Marcus Jackie Pang The Association for Frontotemporal Degeneration Volume XVIII, Issue 2 Summer 2021 7

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

Stephen G. Sherman Kari Ward Maria Cervoni Becky Gill Joseph Martorana Michael Lewis Roberts Nancy Lee Shillady Rosemary Cookie Su-Ling Chang Earl Gilmore Wendy Marty Donna Rose Stephen W. Shippie Weiten Paul Chernoff Suzanne Goodwin Mary L. Mason Elliot Carter Roskow Wendall E. Short Judith Wenzel Charles Chivis Joan Gove Joyce Masotti Stephen Ruskey Mary Shuken Brecher WilliamK. Werth Sally Cihos Jordan Grafman Nancy Mauney Kirk Ryder Joanne M. Silva Glenn A. White Marcella Clark Linda L. Greenwald Steve McCarthy Lucy Ryder Semahat Sinharoy John L. White Carol Clifford Marie Greway Marie McCollum Rebecca Ryder Roberta Sitler Jerry Wilcox James Clifford Parks Griffith Jake McGarvey Mike Samuels Sheila M. Brady Sivacek Page Freeman Wilhite Richard Cohen Amanda Hall Charlotte McKim Judy Schroyer Leo Skaine Michael E. Willer Helen A. Comstock Stephen A. Hall Jame McLeskey David Scott Gary Jean Slough Douglas Albert Judy Comstock Roy Hamilton McParland Susan Scott Ronald Smethurst Williams Maureen Condran Beth Hansen Brian Meehan Kelly Sepelak Charles Smith Linda Wilson Rey Contreras Chelsea Harding Kathy Mele Deborah Sexton Nancy Snee Karen Wingert Wade Coriell David Harding Michele Meyer Paul Sheets Myron Snow Michelle Wolfe Ed Costello Leannah Harding Melva Miller Bonnie Sheperd Philip F. Solverson Lynda Bordoni Wolff Tom A. Cox Daniel Hedaya Sharon Minelli Paul Siedlecki Kristina Spears Preston Wood Lola Cunningham Beverly Hernandez Tony Moeder Jeffrey Silverstein William D. Spencer Joseph Yeager Jean Dallia Nancy Hessey Patrick Monahan Alan H. Simon James H. Stade Stephen Zenger J. Michael Davidson Bill Hill Martein Moningka Joan R. Simon Kathy Stangl Julie Marie Amanda Dawson Colleen Terry Hill Natalie Monroe Kevin Skattum Reid Smiley Robert S. Steel Dickmeyer Zerhusen Michael Dawson Napier Hill Mark Moore James Smith Gail Stetson Regina Day Ace Hilpp Mark Moriarty Stephen J. Smyth Robert Steven Gena Dechev Judith Holcomb Jennifer Moritz Julie Sohn Susan Stevenson Elvira R. Deeley Lee Holloway Christina Morrison In Honor of Yardena Sonesh Gary Stracke Sharon DeFelices Jerry Horn John Morton Teresa Spencer Michael D. Strain Rebecca Adams Yong DeLeo Benjamin Howe Kimberly Kay Mueller James H. Stade Mike Strohm Jaymi Allen Susan L-J Dickinson Ed Jackson Don Muller James Staten Caron Sula Gail Andersen David John Dimlich Pete Jackson Donald Newhouse Anne Stein Ellen J. Sullivan Brad Anderson Mark Doar Jean Jennissen The Newhouse Family Barry Nolte Jeanette Stoothoff Linda Kay Sullivan Marilyn Anderson Suzanne Doll Bison John Cindy Odell Simon Strader David Sundin Melanie Anderson Jenny Dore Bruce Johnson Kevin O’Halloran Fritz Sullivan Gretchen F. Sundius Eddie Arwine Laynie Dratch Mark Johnson Joseph C. Olszewski Susan Marie Sweeney George J. Sundy Jennifer Ator Leslie Dubiel Marjorie Jones Bill Ott Rob Taylor Lynn A. Surprenant Robert M. Austin Susan Dunbar Susan Kay Jones Beth Owens Calvin Thomas Wendy Suzman Travis Bakker Mark Dutton Donald Kalscheur Jack Douglas Owens Phillip Thomas Robert J. Sykes, Jr. Joseph Baldi Christopher Kelley Carrie Edwards James Pahris Jason Thompson Albert Sylanski Carol Kenny Sharon Baldzicki Steven A. Edwards Margaret Pappas Timothy Thompson Bernard Szatkowski Sharon Kessler Norman Barstow Thomas Egeland Amy Parker The Tipton Family Shakeel Tanveer Dan Keuning Anne Bartlett Lynn Eskenazi William B. Parker Michael Todd Julie Thomson Donna Klinedinst Brooks Bartlett Jerry Falcon Alyssa Parr Barbara Todd Howard Thorn Teresa Knicely Karen Beal Sue Faxlanger Farley Richard G. Partyka Eric Tormoen Ralph Kosnowski Thomas Thornburgh Ted M. Beal JanPaul Favero Lynnette Peakes Dominic Toscani Gary M. Kratina Bryan Tinsley Marianne Bee Linda Fiore Scott Pearson Luann Totton Michelle Kyriacou Steve Tipton Stephenson Bellinger Robert Fischel Terry Peetz Janet Traeger The Kyriacou Family George Tisdelle Trish Bellwoar Shelley D. Fischel Albert Penttila Claire Y. Tsiang Michael Lange Franklin Toker Susan Benington Diane Fitzgerald Joanne Penttila James Tully Joyce Langeliers Roy C. Toone Alan Berlin Erin Fleury Mario Perciballi Laura Turlington Collette Lauretto Dale Tyler Joan Berlin Robert Flynn Arthur J. Perry Skip Upham Debbie Leedy Ruth N. Van Doren Estelle Blumberg Ginny Fowler Kandice Perry Helen Van Son Paul Lester Richard W. Van Pelt Dawn Massong Bobby Dennis Fox Cheryl Petrie Thomas Varner Tim LFaone Carlos Vargas Roy Bohr Robert Franch Julia Pfeffer Susan Vogl Frank Lia Maureen B. Vazquez Patti L. Botts Marian Frauenglass Beth Pfluger Beth Walter The Very Rev. Tracey Lind Robert H. Veno Anne Bowes Ben Freeman Cas Poplawski Terry L. Walter Larry Lindberg Elvira Vera Steve Boxill Monica Y. Fried Nancy Porschen Steven Walter Paula Lindberg Dr. Rick Verrette Landy Breeden Paula Frischberg Melanie Thrower Marianne Warley Donald R. Victor Lesley Brock Margaret Fry Lynn Lower Rabenhorst Connie Washburn Michael J. Vivacqua Susan Brody Jenny Funk Caron Olivieri Lukens Lisa Raine Michael Watson Carolena Von Trapp Mike Broom KC Funk Dan Lyne Mary Rand Shawn Whitman Daniel Wachspress Ken Brunner Kenneth Gardiner Ranald MacDonell David Ray Judy Windhorst Phyllis Wachspress Ernest Burdge Brady Gardner Judy Malone Susan Reich Ellen Winslow Beverly Waite John Burgoine Cathy Gardner John Marcuccio Charles Reichel Anna Wintour Marianne Waldman Steve Burkhart Julie Gerow Antonio Marquez Janet F. Reilly Paul Wozniak Richard Wallin Nancy Burrington Niki Gerritsen Natividad Marquez Kyle Robb Stephen Yturralde Michael G. Wallis Frank Callea John K. Gilhooly Margie Marsted The Robert Hatfield Angie Zamberlin Jane V. Ward Rachel Castellanos Kathleen Gilhooly Travis Martin Foundation James C. Zeger

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 XVIII, Issue 2 Summer 2021 Global Conversation on FTD to Highlight World FTD Awareness Week World FTD Awareness Week, in multiple time zones during while incorporating food and raising a week marked by individuals World FTD Awareness Week. Visit funds to support AFTD’s mission. and organizations sharing FTD theaftd.org/world-ftd-awareness- This year, for health and safety, AFTD education and information across week-2021 to learn more. will emphasize virtual gatherings and the globe, will take place September other creative responses. However – 26 through October 3, 2021. In the U.S., the beginning of World if local and state guidelines permit FTD Awareness Week will coincide This year, World FTD Awareness and hosts feel personally comfortable Week will be highlighted by the doing so – Food for Thought hosts The Global Conversation will feature the Global Conversation on FTD, a video may also choose to host a small in- voices of those whose lives have been presentation featuring persons person gathering. touched by FTD. diagnosed, care partners, health World FTD Awareness Week is professionals, and researchers with the launch of Food for Thought, organized each year by World FTD from around the world talking about AFTD’s signature grassroots United, an international coalition how FTD has affected them – as well fundraising and awareness of FTD-focused organizations of as some of the reasons they have campaign. Food for Thought event which AFTD is a member. Visit hope for a future free of FTD. hosts tell their stories, making worldftdunited.net for more The video will be broadcast online people personally aware of FTD, information.

New York State to Recognize FTD Awareness Week 2021

AFTD staff and members of our our communities,” she told AFTD World FTD Awareness Week, community joined several New when she announced her State AFTD Advocacy Manager Matt York state senators on June 2 for Senate run in 2019. She was elected Sharp, MSS, and Senior Director a virtual lobby day in support of a the following year and took office in of Advancement Ben Freeman resolution to recognize this fall’s January 2021. spent the June 2 lobby day upcoming World FTD Awareness virtually meeting with the staff of has officially adopted Week. five senators who sit on the State Hinchey’s resolution, proclaiming Senate Health Committee: Sens. The resolution’s sponsor, Sen. September 26 to October 3 FTD , , Phil of New Boyle, Kevin Thomas, and York State’s 46th district, New York State Senator Michelle Hinchey – Health Committee Chair Sen. led the lobby day. Sen. whose father, U.S. Rep. Maurice Hinchey, had FTD – Gustavo Rivera. Hinchey’s father, the late introduced the resolution that recognized Sept. 26 to U.S. congressman Maurice Oct. 3 as FTD Awareness Week. Persons impacted by FTD Hinchey, died of FTD-related also joined the lobby day complications in November proceedings. Sheryl Whitman, 2017. Awareness Week in the state. It aligns who is living with primary with the recognition of World FTD progressive aphasia (PPA), and Since her father’s diagnosis, Sen. Awareness Week, which comprises her sister, Jill Whitman, spoke Hinchey has worked to raise events, activism, and engagement with the staff of Sen. Rivera, who public awareness about FTD. focused on raising FTD awareness represents their home district, “When [my father] passed I felt across the globe. [See above for while AFTD volunteer Peter Bee it was incredibly important for more information.] spoke with Sen. Thomas’s staff me to pick up his mantle and be about being an FTD care partner a voice for working families and To raise awareness of FTD and to his wife, Marianne. The Association for Frontotemporal Degeneration Volume XVIII, Issue 2 Summer 2021 9 Giving a Hand to Our Helping Hands! AFTD’s Persons with FTD Advisory Council “We are passionate about the people with Historically, Council members say, the For many of the members, joining the this disease having a voice,” said Amy perspectives of persons diagnosed have Council has provided a sense of purpose, Shives, speaking on behalf of the AFTD been underrepresented or even ignored working with AFTD to help create a Persons with FTD Advisory Council, in discussions about FTD – something better future. Jennifer Lee, who joined of which she is an inaugural member. they are working to rectify. “I think the Council in June, shared that “being “We’re passionate about the fact proactive with the [Council] allowed that we are still very bright and me to focus on that work while looking very able, as our group proves.” at the positive side of everything rather than sitting there and waiting Since 2020, the Council has for the sky to fall.” helped to ensure that the insights of people living with FTD are Lee continued: “If someone has FTD, considered in the development they should volunteer – because who of AFTD’s policies, programs, and better to volunteer than somebody services. Before the Council was who lives with it every day? Through officially chartered last year, AFTD your own experiences, you can share relied on an informal “Think Tank” with others what works for you and of persons diagnosed to inform its what could work for them.” work. it’s important that people know what For member Steve Perlis, the Council has it’s like living with this disease” from a been valuable source of connection. “I feel “AFTD has given me a very rare firsthand source, Council member Anne like I’ve found a home,” he said. “These are opportunity to work with like-minded Fargusson said. not just colleagues — these are friends. people for betterment and to push the mission forward. Sometimes it’s not easy AFTD Advocacy Manager Matt Sharp “Telling [our] stories is a good starting but knowing that I have a tribe and that said that formalizing the Council was point for raising hopes and resurrecting we move [the mission] forward together, “an important step forward for AFTD to the dreams that people like us have for it gives me hope for tomorrow,” said include the perspective of those living being useful, productive, and relevant in Teresa Webb, Council co-chair. with this disease in our work.” today’s world,” he added. AFTD Updates COVID-Related Volunteer Guidelines Whether you are considering compliance with evolving local, state, growing number of in-person activities volunteering in support of AFTD’s and federal guidelines. and events, contingent on local, state, mission for the first time, or you are one and federal guidelines. AFTD’s Volunteer of the 500+ passionate volunteers who We know that for some, virtual Coordinators are available to discuss have already made the choice to share engagement will remain preferable, options and talk through opportunities your time and talents, we want to share whether due to personal safety, with you. how AFTD plans to lead and coordinate challenges of traveling, or challenges volunteer activities and events in the We appreciate our strong national Targeted in-person AFTD volunteer activities coming year. network of volunteers, and we’re can move forward, based on a volunteer’s own grateful for the impact that a The health and safety of AFTD sense of safety, and their activity or event’s community that is all in to #endFTD volunteers – and the safety of all compliance with evolving guidelines. can achieve. We can’t wait to connect volunteer-activity participants – with many of you in person, and to is a priority! As states continue to of taking part in in-person events while bring this mission to others in local reassess their approaches to managing navigating FTD. AFTD will continue to communities across the country, and the COVID-19 pandemic, and as more develop and support a mix of virtual, beyond. people get vaccinated, AFTD has in-person, and hybrid events to meet determined that targeted in-person the different needs of our full range of Visit theaftd.org/get-involved/volunteers- volunteer activities can move forward, volunteers and community members. network to learn about AFTD’s current based on a volunteer’s own sense of in-person and virtual volunteer activities safety, and their activity or event’s Moving forward, AFTD will be offering a and fundraising opportunities. 10 The Association for Frontotemporal Degeneration Volume XVIII, Issue 2 Summer 2021

Going the Perfect Pairing: Distance: Jason Nagin The Jackie Pang Fund hosted a participated in an Olympic virtual wine tasting experience Distance Triathlon in the through Old York Cellars on Hudson Valley in memory of May 7, 2021. Family and friends his grandmother, who passed indulged in an interactive, one- hour wine and chocolate pairing away from FTD; in honor of his via Zoom, guided by a certified mother, who is currently living sommelier and wine educator. with FTD; and in support of AFTD’s mission. The event The event was a success, included a one-mile swim, followed by a 28-mile bike ride, bringing in $2,649 to further AFTD’s mission. and then a six-mile run. Jason fundraised prior to the event and raised $60,475 to support AFTD’s research initiatives. Biking in the Clouds: Blake Ovard An Un-fore-gettable Time: The 10th hosted the Cloud Gravel annual Quest for the Cure Golf Tournament was hosted by Invitational, a gravel biking the Robert M. Hatfield Foundation on November 13, 2020, at event. Bikers could traverse the Bardmoor Golf and Tennis Club in Seminole, . This distances of 50 to 90 miles with year the event raised $9,114 for AFTD’s mission, increasing an option to bike 200 miles in the annual tournament’s total amount raised to $72,264. three days, while elevation gains ranged from 4,600 to 19,600 feet! Participants were asked to donate in support of Moving Miles: James AFTD’s mission, and the event raised $1,228. Staten, recently diagnosed with PPA, wanted to take part in the The Adventures of Two Friends: AFTD-Team’s 2020 Race Season, Author Jack Livingston published the book A Lot Like Fun but due to the pandemic, most – Only Different, featuring stories of his adventures with his races were canceled or postponed. longtime friend Chris Kelley. Chris is currently living with FTD, This year, James is looking forward and Jack is donating a portion of proceeds from each copy to joining the AFTD-Team for races sold to support AFTD’s mission. So far, he has raised $992. in Denver, Philadelphia, and Dallas. Since he began fundraising in December 2020, James has raised $7,376 for AFTD’s mission.

Honoring Donald: Bob Powers hosted a letter- writing campaign in honor of his husband, Donald Clement, who is currently living with FTD and recently moved into a care facility. Bob’s letters shared about his time in the Peace Corps and Donald’s passion for architecture. He also spread FTD awareness and helped to further AFTD’s mission with $5,000 in gifts from family and friends. The Association for Frontotemporal Degeneration Volume XVIII, Issue 2 Summer 2021 11 A Big “Thank You” from AFTD’s Staff!

AFTD is very pleased to announce that this past fiscal the initiative and organized the #FTDhotshotchallenge, a year (July 2020 – June 2021) was the most successful social-media campaign that became the most successful yet for our Grassroots Events Program, raising over independent event to benefit AFTD’s mission to date. $808,000 for our mission. While the year had its many complications, our fundraising volunteers remained To AFTD’s fundraising volunteers – thank you! Thank you dedicated to bringing attention to this disease and the for logging miles on the Charity Miles app, for showing off journey endured by families affected. your culinary skills by hosting a Food for Thought event in Shortly after the pandemic started, we introduced the fall, for sharing stories of love for February’s With Love new virtual fundraising opportunities – including our campaign, for braving the #FTDhotshotchallenge, and for partnership with the Charity Miles app – that grew the planning and implementing creative events of your own. AFTD-Team and let members support the mission we all share while still responsibly social-distancing. Our largest On behalf of AFTD Special Events Manager Bridget annual campaign, Food for Thought, went virtual, allowing Graham and AFTD Fundraising Coordinator Brittany hosts to get immensely creative while keeping safety at Andrews, we want to thank all our fundraising volunteers the forefront. Meanwhile, some AFTD volunteers took who are driving AFTD’s mission forward! Prsrt. Std. U.S. Postage PAID Williamsport, PA Permit #33 2700 Horizon Drive, Suite 120 King of Prussia, PA 19406 www.theaftd.org

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AFTD www.theaftd.org phone: 267.514.7221 toll-free phone: 866.507.7222 Board of Directors Medical Advisory Council David Pfeifer Christian Barrow Daniel Hedaya Kristin Schneeman Chair, Quebec New York Ian R.A. Mackenzie, M.D. Virginia M.-Y. Lee, Ph.D. Chair, University of British University of Kimberly Pang Torres Rick Childs Kristin Holloway Michael Stowell, Ph.D. Columbia, Vancouver Vice Chair, Massachusetts California Colorado Carol F. Lippa, M.D. Brian Rose Rita Choula Jary Larsen, Ph.D. Beth Walter Bradford C. Dickerson, M.D. Thomas Jefferson University Treasurer, New York California California Chair Elect, Harvard University Irene Litvan, M.D. Kacy Kunesh Sandra Grow Joseph Marquez, M.D. University of California, San Diego Recording Secretary, Washington Bradley F. Boeve, M.D. Mayo Clinic, Rochester Helen-Ann Comstock Matt Hatfield Donald Newhouse Mario Mendez, M.D., Ph.D. Founder, Pennsylvania Florida New Jersey Dennis W. Dickson, M.D. UCLA Mayo Clinic, Jacksonville M.-Marsel Mesulam, M.D. Staff Howard Feldman, M.D. Northwestern University University of California, San Diego Susan L-J Dickinson, M.S.G.C. Bridget Graham Jeni Cardosi Bruce L. Miller, M.D. Chief Executive Officer Special Events Manager Volunteer Coordinator UCSF Erin Ficca Bernardino Ghetti, M.D. Penny Dacks, Ph.D. Kerri Keane, M.S.W. University Senior Director of Scientific Initiatives Volunteer Manager Support Services Coordinator Jill Murrell, Ph.D. Adriana Fraser Sharon S. Denny, M.A. Indiana University Amanda Knight Digital Content Writer Jill Goldman, M.S. Senior Director of Programs Development Manager Columbia University Ben C. Freeman Annamarie Given Chiadi Onyike, M.D. Anzhela Matsyshen Volunteer Coordinator Senior Director of Advancement Digital Marketing Manager Murray Grossman, M.D., Ed.D. Johns Hopkins University Elizabeth Graham Christine Stevens, M.B.A. Bridget Moran-McCabe, M.P.H. Development Writer University of Pennsylvania Chief Financial Officer Creighton Phelps, Ph.D. Support Services Manager Ann Schoonover, M.S.W., L.S.W. Elizabeth R. Young Edward Huey, M.D. Matt Ozga HelpLine Specialist Executive Assistant Columbia University Rosa Rademakers, Ph.D. Content & Media Relations Manager Josephare Lector, M.S.W. University of Antwerp Shana Dodge, Ph.D., M.A. William Reiter, M.A. HelpLine Advisor Michael Hutton, Ph.D. Director of Research Engagement Education Program Manager Emma Tomasetti Eli Lilly & Co. UK Howard Rosen, M.D. Esther Kane, RN-CDP Development Coordinator UCSF Matthew Sharp, M.S.S. Support & Education Director Emily Bradley Advocacy Manager David S. Knopman, M.D. Debra Niehoff, Ph.D. Development Assistant Mayo Clinic, Rochester John Q. Trojanowski, M.D., Ph.D. Scientific Director Jeff Thompson Samantha DeMarco University of Pennsylvania Office Manager Lauren Gauthier Administrative Assistant, Research Walter A. Kukull, Ph.D. Social Media & Online Brittany Andrews Raymond Frattone University of Washington Communications Manager Fundraising Coordinator Administrative Assistant, Programs

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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.