Volume XVIII, Issue 1 Spring 2021

Newhouse and Holloway Gifts to Advance AFTD’s Mission dedicated to making the journey easier for other families. Mr. Newhouse created The Donald and Susan Newhouse Fund with a gift of $20 million, the largest single donation in AFTD’s nearly two-decade history. The Fund is named in honor of his late wife, who died of FTD, as did Mr. Newhouse’s Donald and Susan Newhouse brother, Si. Lee and Kristin Holloway AFTD is grateful to announce the Kristin Holloway has created The Fund will accelerate and deepen the creation of two new funds, supported Holloway Family Fund, supported by an organization’s work across our mission by generous gifts from Board members, initial gift of $2 million and with a plan areas of research, support, education, that will help AFTD expand, innovate, to donate $1 million each year for an awareness, and advocacy. The gift is and drive our mission to create a future additional eight years. The fund aims to unrestricted, and will be allocated after free of FTD. further the understanding of FTD; drive planning by Board and staff. In its scope basic, clinical and translational research; and generosity, it will empower AFTD The Board members, Donald E. and accelerate the path toward effective to deepen and broaden the vision of Newhouse and Kristin Holloway, have treatments and cures. our current strategic plan (available both had their lives unalterably affected online at theaftd.org/strategic-plan). by the disease, and are passionately The Donald and Susan Newhouse (Continued on page 5) INSIDE THIS ISSUE FTD Disorders Registry Announces Spotlight on... Its First Strategic Plan Kristin Schneeman...... 2 Since 2017, the FTD Disorders Registry has “This is an important moment for the Registry,” News Briefs...... 2 provided a secure, centralized platform for said AFTD Senior Director of Scientific Initiatives persons diagnosed, caregivers, and families Penny Dacks, PhD. “The Strategic Plan, developed to connect to research participation in collaboration with our partners, allows us Spring Appeal...... 3 opportunities and to evolve from a start- share their day-to- up into a long-term PFDD Meeting...... 4 day experiences sustainable organization of living with with a worldwide reach.” Education Conference...... 5 FTD. Each story advances the “The first pillar of the Donations...... 6-7 research of FTD to Strategic Plan involves hasten treatment development. creating a more robust infrastructure that includes genetic data,” said Registry Director Dr. Fauci Discussion...... 8 The Registry (ftdregistry.org) now presents Dianna Wheaton, MS, PhD, CHES. its first formal Strategic Plan, designed to Helping Hands...... 9 Dr. Dacks, who also serves as president of expand its reach and continue providing the Registry, added, “We’re already HIPAA- value for participants and researchers. Volunteers...... 9 compliant, but a technology upgrade is needed Four strategic pillars and goals inform the for the Registry to better reach international plan: Infrastructure, growth, partnering The AFTD-Team...... 10-11 communities.” and collaboration, and sustainability. (Continued on page 8) 2 The Association for Frontotemporal Degeneration Volume XVIII, Issue 1 Spring 2021 Spotlight on…Kristin Schneeman, AFTD Board of Directors

Kristin Schneeman began her Director of Programs at FasterCures, [didn’t] know a whole lot more relationship with AFTD in 2019, when a , DC think tank that than that,” she said. “Now that we she led a discussion on is part of the Milken know what his situation was, we’re the concept of “patient- Institute’s Center for fairly confident that his mother and driven philanthropy” Accelerating Medical brother had the same condition, so for the AFTD Board. Solutions. Through we may have a familial variant.” her work, Schneeman Since then, she has As an AFTD Board member, and her team focus on served as a member Schneeman hopes to continue to how patient-driven of AFTD’s Research provide more of her professional philanthropy can act as a Committee, where she knowhow to the organization while catalyst for accelerating provided her expertise “filling in the gaps in the research change in the medical and insight on ways that landscape” to help further AFTD’s Kristin Schneeman research ecosystem. nonprofits and other mission. disease-focused organizations can have a greater impact on engaging While Schneeman has worked She is also eager to learn more the people and community about AFTD’s existing work “I felt like I had something to offer to help [AFTD] move its they serve. in advocacy, education, mission along,” said Schneeman, whose father had FTD. and support for caregivers “I bring this broader and persons diagnosed. perspective of how foundations alongside other healthcare Historically, she said, AFTD has are engaged in research and organizations, she was particularly been “very thoughtful about its role development that seemed like it drawn to AFTD because of her own and its approach in doing a lot of could be useful,” she said. “I felt like connection to the disease: Her father, important things.” I had something to offer to help Dr. Peter Schneeman, died of FTD- Schneeman lives in [AFTD] move its mission along.” related complications in 2007. with her husband, Ezra Greenberg, Since 2005, Schneeman has been “My father had a diagnosis and we and their daughters.

AFTD News Briefs

AFTD Awards 2020 Pilot Grants A Successful AFTD Virtual Volunteer Leadership Summit! AFTD Pilot Grants – our longest-running funding program – provide critical support to early-career investigators AFTD’s inaugural team of Ambassadors recently gathered and encourage them to become lasting contributors to with staff for a 4.5-hour virtual volunteer leadership FTD research. The 2020 Well-Being in FTD Pilot Grant summit. Volunteer expert and AFTD consultant Sheri was recently awarded to Allison Lindauer, PhD, of Wilensky Burke facilitated the successful meeting. Kerri Health & Science University. Dr. Lindauer’s project will Keane, AFTD Volunteer Manager, said, “Time was well customize an existing telehealth program (STELLA) to spent equipping our leaders as representatives to broaden address the unique needs of FTD caregivers, based on and expand their reach across the country.” Some of the input from the caregivers themselves. Maria Catarina topics covered included strategies for achieving goals, Silva, PhD ( General Hospital), was awarded building relationships, and having a positive impact the 2020 Basic Science Pilot Grant to study a class of during COVID-19. “It is a great feeling to know that I drugs that ramp up the process responsible for removing am part of a winning team of wonderful, caring people,” damaged or dysfunctional proteins, known as autophagy, said AFTD Ambassador Jerry Horn of , while to determine if – and how – they reduce the abnormal Ambassador Melissa Fisher of Oregon said, “I walked accumulation of the FTD-associated protein tau. away inspired and feeling valued.” The Association for Frontotemporal Degeneration Volume XVIII, Issue 1 Spring 2021 3 4 The Association for Frontotemporal Degeneration Volume XVIII, Issue 1 Spring 2021 AFTD Hosts Successful Externally Led Patient-Focused Drug Development Meeting AFTD hosted an Externally Led burdensome, and what you would former caregivers. Participants Patient-Focused Drug Development want most from an approved therapy.” answered live FTD-related polling (EL-PFDD) meeting on March 5, questions; many called in to share EL-PFDD meetings help to ensure that allowing persons diagnosed and personal stories of themselves or the experiences, perspectives, needs, current and former caregivers a loved ones. Viewers were also able and priorities of persons affected by valuable one-time opportunity to to send in written comments about a specific disease are captured and inform the development of federal their experiences. (Visit tinyurl.com/ meaningfully incorporated into the regulatory processes for potential AFTD-PFDD to learn more.) FTD therapeutics. FDA’s drug-regulation process. These Following the EL-PFDD meeting, An estimated 550 people joined The AFTD-led PFDD meeting featured live AFTD will prepare a report the interactive livestream, hosted input from persons diagnosed, as well as summarizing these testimonies. by AFTD CEO Susan L-J Dickinson current and former caregivers. Known as a “Voice of the Patient” and James E. Valentine, who report, these summaries are a key previously worked with the FDA. meetings help the FDA to understand resource for FDA regulators to help what it’s like to live with a particular better understand what people living “To the people and families from disease with an insider’s perspective with FTD and their care partners/ around the world who live the FTD of its symptoms and how they affect journey every day, this meeting daily living. caregivers most want to see in is for you,” Dickinson said during treatment options. the meeting. “It’s your chance to The AFTD-led PFDD meeting ensure that the FDA understands featured live input from persons The Voice of the Patient Report the urgent need for FTD treatments, who are either diagnosed with FTD will be publicly available on AFTD’s which symptoms you find the most themselves or who are current or website for review. The Association for Frontotemporal Degeneration Volume XVIII, Issue 1 Spring 2021 5 AFTD Convenes 2021 Education Conference As this issue goes Powell, MD, director of the Finger, MD, assistant professor of to press, AFTD is Montefiore Einstein Center Neurology in the Schulich School preparing our 2021 for Bioethics; Chiadi Onyike, of Medicine & Dentistry at Western Education Conference. MD, MHS, director of the FTD University. By the time you receive and Young-Onset Dementias this newsletter, the Program at Johns Hopkins The 2021 Education Conference conference will likely University; Adam Staffaroni, spanned two afternoons, May 13- have just taken place. PhD, assistant professor in 14, and was held entirely online. the Department of Neurology, For more information about the Scheduled speakers Memory and Aging Center at conference, and access to its at the 2021 Education the University of video archives, visit theaftd.org/ Conference include Tia San Francisco; and Elizabeth education-conference-2021.

Newhouse and Holloway Gifts (Continued from page 1) “To face an FTD journey is to fervently Family Fund and the American Brain collaboration around a specific, wish that no one should ever face Foundation in collaboration with the emergent issue. The first summit, one again,” said AFTD Board Chair American Academy of Neurology. envisioned for early 2022, will seek David Pfeifer. “Don’s generous gift to accelerate development of digital “FTD has taken center stage in our reflects the urgency of a community biomarkers for FTD. The emergent family’s life since my husband, Lee of thousands of donors and volunteers field of digital biomarkers is harnessing Holloway, was diagnosed in 2017,” said unwilling to accept the fundamental advances in technology to enable Ms. Holloway. “Lee was a brilliant lack of treatments for FTD today.” researchers to collect physiological technologist and entrepreneur data via remote monitoring—like a “As my Suzy would have smart watch or phone—and thus wanted, I have committed Generous gifts from Board members Donald E. Newhouse enable participants to provide myself to do what I can, so and Kristin Holloway will help AFTD expand, innovate, and more, real-life data without that others do not suffer as drive our mission to create a future free of FTD. having to get to a clinic. she did,” Mr. Newhouse said. “AFTD proved to be the most “Kristin’s role on AFTD’s Board effective vehicle for carrying out my who excelled at building technical – and her philanthropic commitment commitment, and my collaboration infrastructure to solve hard problems. in establishing the Holloway Family with this organization, and generous Fund – reflect strong resilience and board members like Kristin Holloway, “It is vital to find better ways to determination brought into action,” is a labor of love.” support research and expand the said AFTD CEO Susan L-J Dickinson, medical community’s understanding of MSGC. “I’m hopeful that her gift will The Holloway Family Fund will first fund this disease so that FTD can be treated, bring new awareness of FTD’s impact an expansion of AFTD’s postdoctoral and eventually cured,” she continued. on the lives of so many.” fellowship program. These fellowships “Focusing the fund on research was seek to attract the best young minds important to our family, and builds on Mr. Newhouse said, “I draw inspiration in science to FTD, and inspire a new Lee’s inherent gift to create solutions from seeing Kristin and her family generation of researchers to dedicate for tough problems.” dedicate themselves so boldly to their careers to advancing FTD science. this mission, and I hope that it will An announcement is forthcoming for The Holloway Family Fund will also encourage others who have seen loved the 2022 Clinical Research Training support an annual research summit ones impacted by dementia join us Scholarship in FTD – the first award to convene medical professionals in bringing an end to the devastating of its kind – funded by the Holloway and researchers, and encourage form known as FTD.” 6 The Association for Frontotemporal Degeneration Volume XVIII, Issue 1 Spring 2021 Those We Honor... Those We Remember Gifts received from October 1, 2020 –January 31, 2021 In Memory of

James S. Abbott Julian C. Byrd Mary B. Elkins Kevin Harvey Diane Kukac Robert H. Moore Billy Abandon Casey Cameron David Elliott Donna Hastings David Kukar Corey Morrell James S. Abbott Wendy Cameron Denise Elson Darrell D. Hatt Gloria J. Kukurin Stephen Roger Morris Maryann Cassello Abbott David C. Campbell Frank Engelkraut, III Denita L. Hawley Donna Kunesh Tom Moskaluk Lydia Adalian Donald L. Campbell Christine Engelmann John M. Headley Tim LaFone Joseph Russell Moulton Charles Adams Dwight Campbell Mary Jo Enneking H. Clay Heath Harold J. Lanclos Judy Mulik Lynda Adams Rick Campbell Linda Calvert Eriksen Harold Hedaya Isobel Lander W. Flynn Murphy Roger Adams Cindy Cardosi Carol Ann Esposito Patricia Jane Heil Betty Landis Patricia Murray Janis Michelle Adkins-Tillery Carlin James C. Esque John D. Heizman Christopher Lane John R. Musser Laura Ahlbeck Beverly K. Carlson Amy Evans Thomas Henderson Donna Lapsker Fereydoon Naghavi Michael P. Alban Donald Carnig Anne R. Everard Robert L. Hermann Larry Largent William H. Neveker Edward Glen Allen Betty Carter Lillian Fabrikant Luis Hernandez Maurice LaRiviere Si Newhouse Robin K. Allen Mary Caruso Rose Marie Fama Jennifer R. Heuer Charles L. Larkin Susan Newhouse Tracy Scott Allison Willis H. Caterson Michael Fane Patricia Heyden Peter J. Larsen Peter Newton Gary E. Anderson Philip M. Cavender Suzanne Carroll Fariello Clarence Higby Dale M. Larson Joanne Nichols Dennis Andrews Bruce L. Chalmers Ken Farnham Herbert Andy Higham David Laszlo Lonnie Dean Nielsen JoAnne Andrews Linda Charbonneau Harold Fechtner Judy Hilliard Charles Alfred Lawson, II Louis Nieto Frances Angelino Leon Charles Bill Fehon Julia L. Hilliard Larry Leifer James L. Nitchals Jose Aponte Wanda Chester Michael E. Fenoglio Randal Hillman Robert Lepp Kenneth Nolan Ronald Aqua Beatrice Childs Linda Pelke Fenwick Bernadette Hinton Arnette Lester Arnold Noronha Billy C. Ard Andrew Choo Claudette Filipkowski Dale Hitchcock Arlen Levi Juliet Procaccini Obsteins Anna Held Audette Kathy Christie Sharon Firpo Mark Ho Suzanne J. Levine Anthony Mark Olhausen Sharon Autry Joanne Christman Janet Flaccus Caleb Thomas Hodsdon Leslie Levinowitz Lawrence Carl Olivieri Emerson R. Avery Linda Arlene Clark Alice Elaine Fleming Gary Hollrah Donna Levy Pamela Sepple Olson Gary Baasch Karen Sue Cleveland Lawrence Flon Susan Elaine Holt Ruth S. Levy Jeff Ormes Frank Baffa Lawrence T. Cline Susan Terry Foley Robin Holtz Glenn B. Lewis Diane Osborne Betty J. Bales Larry Cline William Edward Ford Mary Patricia Honeyfield Kathy Lewis Marie Oshanna Joan Sherrill Weinberg Banks Julie Clingner Frances Rose Forst Deborah Horn Daniel Lineback Rhoda M. Oswald Cecilia Barich Brenda Sanderson Cobb Tracy Forte Garfield H. Horn Kathleen M. Littlejohn Nancy Packard David A. Basham Carol Cohen Betty Fox Patricia Horn Doreen Llagas Deborah J. Page Barbara Basla Charles Cole Bertha Frank John Hornburg Thomas Loeffelholz Terrell Pahl Eduardo Bastida Michael J. Coletti Eugene Frank Gary Hosley Diane Lofgren Joseph A. Palmisano Jerry M. Baston Gail Colfelt Charles E. Franklin Norman G Hostler Vaughn Lombardo Jackie Pang Kathleen G. Beal Craig Comstock Karen Freeman Donald Ray Houlette Gary London Charlotte Panton Rosemarie Beck Vincent Condon Detlef Frey James Howard David Long Janet Lee Panzer Deric Bentley Denise Connelly Tracey W. Fried Donna A. Howell Howard A. Lovett Judith Papesh Cathy Berger David J. Cooper Laurena Friedel Linda Howerton Kenneth Ludwig Donna Jean Pedrick Paradis Lawrence Bergin Maryann M. Corey Carol Fuerneisen Michael Howie Stefan Luger Paul Parenti David Berkowitz Sharon Cornwell Carla Fuller Linda K. Hubbard Brian Curtis Lynch Hugh M. Parrish Linda Bernardin Charles Philip Cristal Jo-an Kathleen Fultz Joyce Huebner Mark C. Lyons Alan Pasquesi Deborah Graham Bernstein Joseph M. Cutuli Nancy Gabbrielle Pamela Hughes Barbara Mackey Dennis B. Patrick Carol J. Berry Ray Cyrus Paul F. Gamberdella Robert Hunter Steve Mackey Maureen Patrick-Rose Paul Berte Gloria A. D’Addio Mary Monica Garber Linda Hutmacher Kathleen J. MacLaren Gary Pellegrom Joseph Bevivino Elaine Dahl Ken Gardiner Robert Hydar Harriet Tipton Madison Kathleen Pelley Charles Leroy Biehler Pamela Daley John Gardner Charles Ice Thomas Maher Camilla Perry Antonio Biello David Archie Daniel Shira Garvett John Michael Ihrig Phyllis Malloy Jacqueline Pevec Betty J. Biggins Connie Daniels Lee Gass Claud E. Ivie Chester Malon Jackie Pevec Sondra Birnbaum Van Daniels David Gaudin Jay Jackson Edward Malon Christopher Pfaendtner Sandra Bishop Elaine Dapo-Snyder Richard Gautreaux Bob Jaspar Paul Malone Mary Catherine Pfeifer Deborah Blackwell John Earl Darmer S. Gendelman Shirley Jeffries David Mamolen Le Kiem Huong Pham Lynn Bloch Ann Cockrell Davis Michael H. George Karl Hagerup Jensen Phyllis Mankowitz Kimberly Phares Michael R. Bober Kathleen L. Davis Anne B. Geremia Mary D. John Susan P. Marcus Antoinette V. Pizzitola Sherrill Bock Kevin Davis Anthony Giacobbe William S. John Patricia K. Marino Joseph Wayne Plageman Arthur George Bollaert Mike Davis John J. Gibbs Linda Johnson Vito Marino Kelly Plante Joyce Bolte Robert Samuel Davis Sharon Girvin Robert N. Johnson Marshall Randolph Martin Allen Plocher Nora G. Bomke Steve Dawson Victoria Glandon Timothy W. Johnson Jan Materka Judith Poehler Kimberly Booten Fred A. Dean Wayne Golden John P. Jordan Matthew Sanderson Matherne Daryl F. Pokrana Marsha Bristow Bostick Gerald Decker Raymond S. Gomez Carrie Jouflas Elaine F. Matthews William Pordy Mark Botteon Joseph J. DeLiso Maria C. Gonzalez Estelle Kalin Robert Matusiak Hershel E. Portnoy Joy Spartin Bowen George T. Demkow Barbara Gordon Bobbie Kallemeyn Richard L. Maulorico Palmer Fishwick Posvar Clarke Bowers Kathryn Denny Laura Ann Gordon Alice Kallus Vernon Maunu Dorothy Powell Daniel Boyd Barbara DeRocher Mike Gordon Jan Kandell Joan V. Mazzarelli David W. Price Ken Bradley Renee Diamond David Gragg Lydia Kao Edward James McAndrew John J. Primeau Annie Brady Charles Anthony Diana James E. Graham Eileen Kaplan Ronald McCarthy Judith Priven Michael T. Brand Pamela Dircksen Shawn Graves Dawn Karceski John Barry McCool Vera Quinnan Eric Brateng Francis J. Dirksmeier Jeff Gray Aunt Karen Robert McGlaughlin Neil Radin Rosie Braun Sheila Dirksmeier Harriet Green Mira P. Karnani George Patrick McGrath Carol Radtke Richard Benjamin Braxton Jane Dohler James Brian Green Joseph Katz Martin J. McGreevy William Rafferty Barbara Bray Todd Michael Dolan Patty Green William Kauffman Evelyn McGuire LaDonna Rahn Barb Bray Eleanor Dondiego Helen R. Greenfield Nicholas Kavala Daniel McLeister Linda Randazzo Alan Brinkley John Donovan, Jr. George Greenway James Clement Kearney Thomas W. McMahon Samuel Rankin Marie Brocato Carol Lynn Dougherty Jeff Grems James C. Kehoe Margaret McMurrer Carol Rao Catherine Broer Virginia Douglass Robert Grems David W. Kelly Clare McNamara Saraswati Rao Janice Brooks George Scott Downing Susan Grengs Virginia Kelly William McNamer Swati Rao Kathryn Brooks Diane B. Drayson Patricia Griffin John Edward Kenna Anna Marie McNeil Kenneth A. Rathjen Kathy Brooks John F. Drennan Ronald Griffin Laura Kenny Karen McQueen Raymond Reaves Sylvia McDaniel Brooks Linda Drucker Karl Grow Ronald Kimber Robin Mellor Karen Reed Suzanne J. Broudy Shirley Drucker Janie McManus Heine Gruber Robert Kinelski Moussa I. Menasha Tyler K. Reed Nancy Brown Aaron Dubin Alice Guiney Carole Kipp Debra R. Messer Thomas Regan John M. Browning Pamela Duncan David Haines David A. Kish Judith Ann Messerli Seth Reice Alvin Brownstein Ronald Duncan Albert Charles Hall Ralph Kissel Carol Meyer Mary Lou Reilly Michael Bruemmer Barbara Dunlap Edward Hall Elaine Phillips Kistner Rosemarie R. Miele Nancy Reilly William Brunk Kyle Steven Durkin Mama Hall Alan Klein Ann Miller Scott Reinewald Theresa Bryant John Dystrup Mary Hall John F. Kline George Miller Jeff Repetto Donald Seymour Buck Bob G. Eaton Cindy Lou Halverson Scott W. Kluth Virginia E. Miller Heath Rhoads James Buckley William W. Eaton Douglas L. Hamilton Robert Knight Alexandra Milmoe Elaine Richmond John Buonanno George Edwards Theresa Hansen Peter Kohudic Michael A. Minelli Kathleen Rick Cynthia Burgess Mary Einhorn Therese M. Harlett John Kretekos Patricia Mitchell Jennifer Elkins Rinow Lawrence Burnetski Mark Eissler Ken Harnham Judith Krueger Dennis Mixdorf John Ritter Lawrence Busking William R. Eissler Nancy L. Harshe James Krug Norm Moder Emily Brooks Roane Sylvia Butterfield Jeannette Lyne Ekstrand Pamela Rose Harvalis Shari Kuehler Robert A. Monk Howard Roberts The Association for Frontotemporal Degeneration Volume XVIII, Issue 1 Spring 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.

Mildred Roberts Buddy Stevens Reggie Williams Regina Day Carol Kenny Julia Pfeffer Carol Ann Rockett Thomas H. Stevens Kelley Sue Wingate Gena Dechev Sharon Kessler Beth Pfluger Elsie Rodgers Al Stevenson Karen Wingert Elvira R. Deeley Dan Keuning Cas Poplawski John A. Rodriguez Susan Stevenson Elliot Winograd Sharon DeFelices Donna Klinedinst Nancy Porschen Judy Van Roekel Kathy Jo Stocking Robert Steven Winters Yong DeLeo Teresa Knicely Melanie Thrower Rabenhorst Douglas R. Rogers Gary Stracke Christopher Witt Susan L-J Dickinson Ralph Kosnowski Lisa Raine Richard Rohl Edward Streiff Dale Alan Womack David John Dimlich Gary M. Kratina Mary Rand Joseph A. Rokita Mike Strohm David F. Woodford Mark Doar Michelle Kyriacou David Ray Patricia Romanoski James Wooldridge, Sr. Merwin Stroup Suzanne Doll The Kyriacou Family Susan Reich Maureen Rose Bill Struzzi Harriet Yassky Jenny Dore Michael Lange Charles Reichel Brian Rosequist Ray Stumbo John G. Yost Laynie Dratch Joyce Langeliers Janet F. Reilly Henry Roth Caron Sula Christine Youngclaus Leslie Dubiel Collette Lauretto Kyle Robb Patricia Routt Linda Kay Sullivan Chris Edmondson Yurkanan Susan Dunbar Debbie Leedy The Robert Hatfield Foundation Timothy Rowans David Sundin Stephen Zenger Mark Dutton Paul Lester Tom Ruhlman Lucy Suronen Julie Marie Dickmeyer Zerhusen Michael Lewis Roberts Carrie Edwards Tim L. Faone Robert G. Rulison Lynn A. Surprenant Donna Ziegler Donna Rose Steven A. Edwards Frank Lia Leda Ruskey Wendy Suzman Elliot Carter Roskow Thomas Egeland The Very Rev. Tracey Lind Patricia H. Ryan Thomas J. Swanson Stephen Ruskey Lynn Eskenazi Larry Lindberg Stephen Gary Sackel Stephen Swid In Honor of Kirk Ryder Alma Sakoda Robert J. Sykes, Jr. Jerry Falcon Paula Lindberg Lucy Ryder Karen Saksa Albert Sylanski Rebecca Adams Sue Faxlanger Farley Lynn Lower Rebecca Ryder Connie Sambo Bernard Szatkowski Jaymi Allen JanPaul Favero Caron Olivieri Lukens Mike Samuels Barry Sandler Daniel R. Sztraicher Gail Andersen Linda Fiore Dan Lyne Judy Schroyer Seymour Stony Sarokin Marcia Ann Tambellini Brad Anderson Robert Fischel Ranald MacDonell David Scott Arpiar G. Saunders Salvatore A. Tavormina Marilyn Anderson Shelley D. Fischel Judy Malone Susan Scott Red Scarff Salvatore J. Tavormina Melanie Anderson Diane Fitzgerald John Marcuccio Kelly Sepelak David Kevin Schafer Catherine S. Taylor Eddie Arwine Erin Fleury Antonio Marquez Deborah Sexton Benjamin Schatman Joyce Taylor Jennifer Ator Robert Flynn Natividad Marquez Paul Sheets Merrill Schell Otto Everett Tessmer Robert M. Austin Ginny Fowler Margie Marsted Bonnie Sheperd John Schieffelbein Donna Jay Thistle Travis Bakker Dennis Fox Travis Martin Paul Siedlecki Paul T. Schleyer Laurence Thomas Joseph Baldi Robert Franch Joseph Martorana Jeffrey Silverstein John Schloerb Randall Thomas Sharon Baldzicki Marian Frauenglass Wendy Marty Alan H. Simon Jacqueline Schneider Robert Thomas Norman Barstow Ben Freeman Mary L. Mason Joan R. Simon Thomas A. Schoeneberger Howard Thorn Anne Bartlett Monica Y. Fried Joyce Masotti Kevin Skattum Judith Schrier Carleen Tiefenthaler Brooks Bartlett Paula Frischberg Nancy Mauney William D. Schroeder Becky Tiffin Reid Smiley Karen Beal Margaret Fry Steve McCarthy Deborah Scott Jerry Tillman James Smith Ted M. Beal Jenny Funk Marie McCollum Mary S. Scott Barbara Tinsley Stephen J. Smyth Marianne Bee KC Funk Jake McGarvey Charles Alexander Scudder Bryan Tinsley Julie Sohn Stephenson Bellinger Kenneth Gardiner Charlotte McKim Gerry A. Selvaggio Stephen M. Tipton Yardena Sonesh Brady Gardner Jame McLeskey Tracey Ann Sepesy Gretchen Sue Toles Trish Bellwoar Teresa Spencer Cathy Gardner Virginia McParland Beatrice W. Serre John M. Totten, Jr. Susan Benington James H. Stade Julie Gerow Brian Meehan Rodger Sesna Susan Turk Alan Berlin James Staten Niki Gerritsen Kathy Mele Deborah Seymour Donna Turner Joan Berlin Anne Stein John K. Gilhooly Michele Meyer Stanley M. Shapiro Carol Tyler Estelle Blumberg Jeanette Stoothoff Kathleen Gilhooly Melva Miller Al Sharpstien William H. Tyson Dawn Massong Bobby Simon Strader Becky Gill Sharon Minelli Ina Ray Sheldon Denise Ucci Roy Bohr Fritz Sullivan Earl Gilmore Tony Moeder Ned James Shepherd Phyllis S. Umansky Patti L. Botts Susan Marie Sweeney Suzanne Goodwin Patrick Monahan Nancy Shillady Bonnie Lee Utz Anne Bowes Rob Taylor Chester Chet Shippy Joan Gove Martein Moningka J. Vanderbosch Steve Boxill Calvin Thomas Chet Shippy Landy Breeden Jordan Grafman Natalie Monroe Robert H. Veno Phillip Thomas Gregory Dean Short Donna Vilardi Lesley Brock Linda L. Greenwald Mark Moore Jason Thompson Wendall E. Short Michael J. Vivacqua Susan Brody Marie Greway Mark Moriarty Timothy Thompson Geno Silva Carolena Von Trapp Mike Broom Parks Griffith Jennifer Moritz The Tipton Family Joanne M. Silva Donna Voss Anderson Ken Brunner Amanda Hall Christina Morrison Michael Todd Barbara Simon James Vowell Ernest Burdge Stephen A. Hall John Morton Barbara Todd Jean R. Simpson Dan Waber John Burgoine Roy Hamilton Kimberly Kay Mueller Eric Tormoen Semahat Sinharoy Beverly Waite Steve Burkhart Beth Hansen Don Muller Dominic Toscani Thomas Sise Marianne Waldman Nancy Burrington Chelsea Harding Donald Newhouse Luann Totton Sheila M. Brady Sivacek Christine Walker Frank Callea David Harding The Newhouse Family Janet Traeger Joan Skurie Michael T. Walsh Rachel Castellanos Leannah Harding Barry Nolte Gary Jean Slough Claire Y. Tsiang Diana D. Wantz Maria Cervoni Daniel Hedaya Cindy Odell Mandy Smearman James Tully Dwight H. Warrington Sr. Su-Ling Chang Beverly Hernandez Kevin O’Halloran James W. Smiley Laura Turlington Shirley Z. Wasser Paul Chernoff Nancy Hessey Joseph C. Olszewski Glenn Smith Kimberly Watzke Skip Upham Charles Chivis Bill Hill Bill Ott Jessie J. Smith Murray Wayne Sally Cihos Colleen Terry Hill Beth Owens Helen Van Son Michael Smith Libby Webb Marcella Clark Napier Hill Jack Douglas Owens Thomas Varner Pamela Smith Judith May Weiler Carol Clifford Ace Hilpp James Pahris Susan Vogl Lee M. Soffer Ken Weina James Clifford Judith Holcomb Margaret Pappas Beth Walter David V. Sohan Leonard Weissman Terry L. Walter Dorothea O. Sokola Richard Cohen Lee Holloway Amy Parker Rosemary Weiten Steven Walter Karen Sommers Helen A. Comstock Jerry Horn William B. Parker Joel Welshons Marianne Warley Jeffrey Van Son Raymond Wenderlich Judy Comstock Benjamin Howe Alyssa Parr Connie Washburn Al Sorenson Kenneth G. West Maureen Condran Ed Jackson Richard G. Partyka Michael Watson Robert Sowlles David Wetzl Rey Contreras Pete Jackson Lynnette Peakes Shawn Whitman Susanne Sprouse Pamela Whitmarsh Wade Coriell Jean Jennissen Scott Pearson Judy Windhorst John Stackhouse Fletcher D. Wicker Ed Costello Bison John Terry Peetz Jeffrey Stasa Gary Wiggins Tom A. Cox Bruce Johnson Albert Penttila Ellen Winslow Robert Steele Jerry Wilcox Lola Cunningham Mark Johnson Joanne Penttila Anna Wintour Robert S. Steel Lisa Wilcox Jean Dallia Marjorie Jones Mario Perciballi Paul Wozniak Sanger B. Steel Terryl Wilharm J. Michael Davidson Susan Kay Jones Arthur J. Perry Stephen Yturralde Robert W. Stein Douglas Albert Williams Amanda Dawson Donald Kalscheur Kandice Perry Angie Zamberlin Brian Stephenson Moyese Williams Michael Dawson Christopher Kelley Cheryl Petrie 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 1 Spring 2021

FTD Disorders Registry (Continued from page 1) “We need to cultivate, engage and for expanding revenue streams and Together we built a custom portal on retain new diagnosed persons and partnerships and ensuring longevity,” the Registry website where patients caregivers,” Dr. Wheaton said, referring Dr. Dacks said. now enroll in the five-year ALLFTD to the second pillar – growth. “By the study.” The Registry has recruited more than end of 2022, we want to double Registry 4,200 participants, providing them enrollment, with a major outreach to “Every success brings us one step closer to conquering FTD. We honor underserved communities in the U.S. Four strategic pillars and goals inform the the courage of our community as and across Asia and Africa.” plan: Infrastructure, growth, partnering and they work with us towards a cure,” Dr. collaboration, and sustainability. Pillar number three is an ambitious Dacks said. effort to enhance partnerships and collaborations, establishing the with information on research studies Dr. Wheaton encourages anyone Registry as the global go-to resource and clinical trials. But the Registry’s diagnosed with FTD, their current or for FTD researchers. “And achieving “most significant accomplishment,” Dr. former family members, caregivers, sustainability through long-term Wheaton said, “is a collaboration with and friends to register and help business planning is the final pillar the ALLFTD Research Consortium. contribute to the science of FTD. Dr. Fauci Discusses COVID-19 Vaccine, Dementia Care with NAPA Council Longtime AFTD volunteer Katie Brandt — co-chair of the NAPA families about their goals of care, Brandt, MM, sat down with Dr. Advisory Council and the Director their values, and their loved ones’ Anthony Fauci to discuss the of Caregiver Support Services and values around taking vaccines.” importance of the COVID-19 vaccine Public Relations at Massachusetts Brandt also noted some concerns she as it relates to persons with dementia General Hospital’s Frontotemporal has heard in response to the rapid during a January 25 meeting of the Disorders Unit — told AFTD that she development of the vaccine, a point National Alzheimer’s Project Act felt it important to have Dr. Fauci that Dr. Fauci addressed (NAPA) Advisory Council. during the conversation. In their conversation, Dr. “As Dr. Fauci spoke to, it’s Fauci addressed concerns because of the incredible over any potential risks advances in science in involved with people the past few years around diagnosed with dementia vaccine technology, the in taking the vaccine. He incredible dedication, the explained that there are money, and the time that “likely not” any additional was put into this -- that’s risk factors in persons with what propelled it forward at dementia outside of the such an incredible speed,” expected side effects, such Brandt said. “Never have as inflammation. people had to work at this “There’s very little significant quell the concerns associated with level to get something done.” inflammatory response after the first taking the vaccine. shot, considerably more after the Brandt said she was “so appreciative” “In my work, I have noticed that boost” he said during the discussion. of Fauci for allotting time for the Nevertheless, he added, “I wouldn’t there are caregivers who have conversation. “Not only was Dr. Fauci hesitate” to vaccinate a person hesitancy about it,” she said. “They so incredibly sharp and thoughtful with dementia just because “you’re are worried that it’s a new vaccine about these big critical issues for concerned that the inflammation and questioned if will it make [their] our FTD and related dementia associated with the vaccine is going loved ones’ dementia worse. I tried community — he was also incredibly to be harmful to them.” to think about how [I could] talk with generous and kind,” she said. The Association for Frontotemporal Degeneration Volume XVIII, Issue 1 Spring 2021 9 Giving a Hand to Our Helping Hands! AFTD Volunteer: Dawn O’Gara When Jim Tobin was finally diagnosed awareness in her community, with bvFTD, his daughter Dawn including ensuring FTD is part O’Gara quickly realized that where of the conversation in her local they lived in central Massachusetts dementia-friendly community. She was bereft of clinical and caregiving also recently appeared on Caregivers resources. Solutions Info with Marcia Teele, an online show in which she shared “No one here had even heard of FTD,” her experience and advice on FTD Dawn said. “My family felt isolated caregiving. and realized there must be other Dawn O’Gara FTD families in the region who also “Many caregivers I speak with put up their stories, raise awareness, and needed a community to lean on. I a good front, [trying] to stay strong encourage funds for AFTD’s mission,” decided to help fix the problem by for their loved ones,” Dawn said. “I said Brittany Andrews, AFTD’s volunteering for AFTD.” draw them out to reveal their deeper Fundraising Coordinator. Volunteering was second nature for truths and emotions and provide a Dawn, who had been a Girl Scout safe place to feel human.” Recently, Dawn took on a new Leader and a Special Olympics volunteer leadership position as AFTD coach. “Working with special-needs Dawn has also served as a Food Ambassador. “Before volunteering, for Thought Liaison, supporting I felt helpless confronting this children taught me to look at the volunteers across the country as relentless disease,” she said. “As world from their perspective,” Dawn they plan and host events in support an AFTD volunteer, I have learned said. of AFTD’s annual Food for Thought that compassion, whether you’re Since becoming an AFTD volunteer, campaign. “Dawn’s commitment providing it or receiving it, heals Dawn has worked to raise critical and dedication inspired many to tell everyone.”

AFTD Appreciates Our Volunteers! National Volunteer Appreciation awareness, education, and connection through Virtual Meet & Week was April 18-24, and we’d like leadership to ensure the next family Greets, Zoom support, and volunteer to take this opportunity to express receives the help they need. orientation. a heartfelt thank you to our volunteers! Not only do our We especially thank our volunteers for stepping up Thank you to everyone who has volunteers generously devote in a year that has delivered unforeseen difficulties, hosted a grassroots event, raising their time, they share their particularly for those impacted by FTD. critical funds to support families experiences, knowledge, and and research into improved wisdom with others on the FTD diagnosis and treatment of FTD. journey. Thank you to our Ambassador team, leading the charge and diligently Thank you to all who have shared We especially thank them for networking with local professionals their stories, spread awareness, and stepping up in a year that has and organizations. educated their communities about delivered unforeseen difficulties, FTD and AFTD. particularly for those impacted by Thank you again to those who hold FTD. Throughout the pandemic, spaces of comfort and compassion To everyone who drives AFTD’s our volunteers continue to offer the as support group volunteers and to mission through the gift of their gifts of connection, encouragement, those who bring people together for time and talents, we say: Thank you. 10 The Association for Frontotemporal Degeneration Volume XVIII, Issue 1 Spring 2021

In February, AFTD hosted the 10th anniversary of our annual fundraising and awareness campaign, With Love—an opportunity for our community to share their stories of love, bring awareness to this devastating disease, and raise crucial funds toward creating a future free of FTD. To commemorate this milestone, we asked community members to share their stories in a creative way. 35 people responded by posting pictures with their loved ones, penning poems from the heart, singing songs inspired by the campaign, and detailing their FTD journeys and the love they’ve shared throughout the years. Through this year’s campaign, With Love hosts raised over $85,000 altogether! AFTD would like to extend a heartfelt thank you to everyone who contributed to With Love’s success this year. We are grateful for our two generous sponsors, The Mike Walter Catalyst Fund and The Rainwater Charitable Foundation; the hundreds of people who made donations; and, of course, our 35 fundraisers, who bravely shared their stories of love.

Anthony Cordasco* Hannah Moore* Kendra Clabo* Natalie White Bonnie Shepherd* Jessi Feaster Kim Flanagan* Sarah Sharbach Carol Almeranti* Jillian Condran Kimberly Sullivan Chu Scott Rose* Carrie Benton John Kammerer* Kristin Pursley* Sheryl Whitman Catherine Gardner* Julie Bak Maria Beers & Rachael Martinez Sophia Werning Christe Konopitski Julie Kelly* Melissa Fisher* Steph McLain* Dave Andrews* Karine Adalian Mike Presnal Steven Wilson Denise Parker Kat Primeau* Monika Nolan Susan Scarff Niki Toscani & Mike Sininski *Fundraisers that raised over $1,000 for AFTD’s mission. The Association for Frontotemporal Degeneration Volume XVIII, Issue 1 Spring 2021 11

The Big 1-5: The 15th annual George F. Sidoris Memorial Bar Mitzvah Project: To celebrate his Golf Outing was scheduled to be held on July 18, 2020 at the Lost Bar Mitzvah, Hunter Javeline wanted to complete a Chesed Nation Municipal Golf Course in Willoughby, . While it ended project—“Chesed” meaning “kindness” in Hebrew—and up being canceled due to the pandemic, the Sidoris family did chose AFTD as the organization he wanted to support. not stop there! Through a letter-writing campaign, they sold 15th Hunter’s grandmother, Sheryl, had FTD and passed away anniversary edition “GFS Memorial” t-shirts, raising $10,125 for in October 2018. Hunter’s original goal was $1,012 to honor AFTD’s mission. This event is AFTD’s longest-running grassroots his grandmother’s birthday of October 12th. The fundraiser fundraiser and has donated over $244,000 to our mission in its surpassed its original goal and raised $4,523 for AFTD’s 15-year history. mission.

Former AFTD Board Member Letters for Arnette: Alejandro Bolivar-Cervoni requested Paul Lester hosted his 14th annual letter-writing campaign in Turning 30: donations online for his 30th birthday to honor his mother memory of his late wife, Arnette. He sent both paper and electronic and remember his uncle who are/were both affected by versions of his letter, with the help of our online fundraising platform young-onset dementia. He raised a total of $3,668 for AFTD’s Classy. After all letters were sent out, his campaign raised a total mission. of $10,856. Over the past 14 years, his letter-writing campaign has raised more than $160,000 towards the fight against FTD. Eroding Beauty: The Very Reverend Tracey Lind Golden Anniversary: Barbara and Mike Todd hosted a photo exhibit at Foothill Galleries in Cleveland Heights, were married on October 30, 1970. For their 50th wedding Ohio, titled “Eroding Beauty: A Retrospective Photography anniversary, Barbara asked family and friends to donate to their Exhibit” from September 15 through November 1, 2020. She online fundraiser to honor their special day and to honor Mike, who donated 10 percent of sales to AFTD, in coordination with was diagnosed with FTD five years ago. Through the fundraiser, gallery owner Michael Weil, and was able to donate $2,280 they were able to raise $7,898 for AFTD’s mission. through the exhibition. Charity Miles - A Year in Review

In April 2020, we announced our partnership with the Charity Miles app as a response to the COVID-19 pandemic and a Laura Gamberdella chance for members of our community to foster a virtual connection with our mission and each other. The smartphone app enables donations by tracking miles moved through daily workouts, and turns those miles into a fundraiser for AFTD.

We are incredibly grateful to the 990 AFTD-Team members who downloaded the app and made their miles matter, as they completed 366,000 miles by running, walking, biking, and hiking in their local communities.

AFTD would also like to extend our sincere gratitude to the three sponsors that supported our team members in the last year. In April and May 2020, The Mike Walker Catalyst Fund sponsored miles that members logged at $1/mile, raising over $47,000 designated to AFTD’s support programs and grants. In July, every mile logged was sponsored by Alector at $1/mile, raising $20,000. And lastly, throughout March 2021, Arden Courts Travis Gause sponsored the AFTD-Team for $1/mile, to secure a donation of $10,000!

Through the Charity Miles initiative, the AFTD-Team has raised over $77,000 together! To all our team members logging miles, thank you for your continued support through this partnership. 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, Connecticut Ian R.A. Mackenzie, M.D. Virginia M.-Y. Lee, Ph.D. Chair, University of British University of Pennsylvania Rick Childs Kristin Holloway Michael Stowell, Ph.D. Kimberly Pang Torres 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, Ohio Washington Bradley F. Boeve, M.D. Mayo Clinic, Rochester Helen-Ann Comstock Matt Hatfield Donald Newhouse Mario Mendez, M.D., Ph.D. Founder, Pennsylvania New York 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 Brittany Andrews Bruce L. Miller, M.D. Chief Executive Officer Special Events Manager Fundraising Coordinator Bernardino Ghetti, M.D. UCSF Penny Dacks, Ph.D. Kerri Keane, M.S.W. Jeni Cardosi University Volunteer Coordinator Jill Murrell, Ph.D. Senior Director of Scientific Initiatives Volunteer Manager Indiana University Adriana Fraser Jill Goldman, M.S. Sharon S. Denny, M.A. Amanda Knight Columbia University Senior Director of Programs Development Manager Digital Content Writer Chiadi Onyike, M.D. Lauren Gauthier Johns Hopkins University Ben C. Freeman Anzhela Matsyshen Online Community Specialist Murray Grossman, M.D., Ed.D. Development & Digital Marketing Manager University of Pennsylvania Communications Director Annamarie Given Creighton Phelps, Ph.D. Bridget Moran-McCabe, M.P.H. Volunteer Coordinator Edward Huey, M.D. Christine Stevens, M.B.A. Support Services Manager Rosa Rademakers, Ph.D. Chief Financial Officer Elizabeth Graham Columbia University Matt Ozga Development Writer University of Antwerp Elizabeth R. Young Content & Media Relations Manager Ann Schoonover, M.S.W., L.S.W. Michael Hutton, Ph.D. Executive Assistant HelpLine Specialist Eli Lilly & Co. UK Howard Rosen, M.D. William Reiter Shana Dodge, Ph.D., M.A. UCSF Education Program Manager Emma Tomasetti Director of Research Engagement Development Coordinator David S. Knopman, M.D. Matthew Sharp, M.S.S. Mayo Clinic, Rochester John Q. Trojanowski, M.D., Ph.D. Esther Kane, RN-CDP Emily Bradley Program Manager University of Pennsylvania Support & Education Director Development Assistant Walter A. Kukull, Ph.D. Debra Niehoff, Ph.D. Jeff Thompson Josephare Lector, M.S.W. University of Washington Scientific Director Office Manager HelpLine Advisor 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.