Volume XVI, Issue 2 Summer 2019

60 Minutes Brings FTD Awareness to Millions of TV Viewers On May 5, the venerable CBS Miller, MD. Dr. Miller, who leads a said. “But given that it does, I’m grateful news program 60 Minutes aired a robust FTD program at the University for the chance to have met these people segment on FTD, bringing newfound of San Francisco and is a and shared their stories with our awareness to a television audience founding member of AFTD’s Medical audience.” of millions. Advisory Council, was the medical Upon airing, the story had an Entitled “The Cruelest Disease You’ve expert featured in the piece. immediate and measurable impact on Never Heard Of,” the 14-minute FTD awareness – a testament to the segment introduced viewers to “I wish the illness didn’t exist,” said CBS’s Rome importance of sharing FTD stories. the symptoms of FTD and profiled Hartman. “But given that it does, I’m grateful for AFTD’s website had its highest-traffic several people whose lives have the chance to have met these people and shared day ever on May 5; May 6 was not far been touched by the disease. their stories with our audience.” behind. All told, nearly 89,000 users accessed theaftd.org in May 2019, Rome Hartman, lead producer nearly five times the number of users of the segment, said that he was AFTD also connected producers with from the previous May. (See charts on compelled to tell the story of FTD the Very Rev. Tracey Lind, who was page 8.) “partly because of how little known diagnosed with primary progressive aphasia in 2016, and Amy Johnson, a Inquiries to AFTD’s HelpLine also rose it is, and partly how devastating the following the broadcast. AFTD staff mother of four young children whose symptoms are – and how difficult it provided practical, compassionate is to diagnose.” husband has behavioral variant FTD, and medically accurate information in both of whom were also profiled in the response to 351 HelpLine calls and emails AFTD provided the show’s producers story. with background information on in May 2019, up from 210 HelpLine cases in May 2018. FTD and connected them with Bruce “I wish the illness didn’t exist,” Hartman (Continued on page 8) INSIDE THIS ISSUE More than 600 Take in 2019 Spotlight/ Kimberly Pang Torres...... 2 AFTD Conference Held on May 3 in Los Angeles, AFTD’s who identified as having FTD. Notably, News Briefs...... 2 2019 Annual an additional Education 300 additional 3 Summer Appeal...... Conference people followed provided along with the Postdoc Fellowships...... 5 the latest conference developments in live online. For ADRD Summit...... 5 FTD science and the first time, Donations...... 6-7 offered practical AFTD ensured information that the 60 Minutes (cont.)...... 8 about the conference realities of would be Helping Hands...... 9 living with the professionally disease. Actors Lara Jill Miller and Martha Madison broadcast Volunteer Appreciation...... 9 to members of our More than 330 people were in community throughout the country 10-11 The AFTD-Team...... attendance, including 38 registrants and the world. (Continued on page 4) 2 The Association for Frontotemporal Degeneration Volume XVI, Issue 2: Summer 2019 Spotlight on…Kimberly Pang Torres, AFTD Board of Directors

Jackie Pang was diagnosed with FTD in “I’m so thankful that I stumbled upon in Jackie’s honor. “We did not expect 2017, less than a year after AFTD’s website,” she said, the support we got from family, friends, her daughter, Kimberly “because that was the best people we barely even knew,” Kimberly Pang Torres, first source of information about said. Team Jack Attack’s efforts at the noticed changes in her FTD – and it was presented two Philadelphia Marathons combined to behavior. The diagnosis simply, so that we could raise $61,000 to support AFTD’s mission; understandably rattled understand it.” a separate Food for Thought event raised the family: “We knew more than $3,000. this was not going to The Pang family has since been As a new member of AFTD’s Board, be a good prognosis for heavily involved in fundraising Kimberly said, “I’m going to stay Mom,” said Kimberly, to support AFTD’s mission. passionate about fundraising.” She also who joined AFTD’s Board Kimberly recalled her reaction hopes to further AFTD’s work toward in May 2019. “We know to her father, Joe Pang, telling creating greater public awareness of FTD. how this is going to end.” her he was going to participate Kimberly Pang Torres in an 8K – “My dad is definitely In considering whether to join AFTD’s But Jackie’s FTD spurred not a runner, so for him to say Board, Kimberly asked herself whether she the family into action, not resignation. he’s participating in an 8K, I knew he had time for it – she has a busy full-time “You can focus way too much energy on was serious and that I had to participate job at Johnson & Johnson, and supports being sad,” Kimberly said. “I had many too!’” Joe was a family rough moments of tears, sadness, and determined “I know that other people will be able to find hope business. But anger, and still do. But as a family, we to finish the and community through AFTD,” Kimberly said. “That she quickly made a choice that we would focus our race, saying he was the most important thing for me and my family.” realized that energy on the things we can control would crawl to “I have to have instead of the things we cannot change. the finish line if necessary. time to do this,” she said. “I care so much If we can share our experiences to help about AFTD and its mission. I know that other families through their journey -- Joe and the rest of the Pang family came other people will be able to find hope that is what we are going to do.” out in full force to the Philadelphia and community through AFTD. That was Marathon in 2017 and 2018 – members of the most important thing for me and my Like most people, she had never heard their race team wore matching t-shirts family. The sense of not feeling so alone of FTD until it directly affected her life. bearing the moniker “Team Jack Attack” – it makes the journey just a little easier.” AFTD News Briefs

AFTD Adds New Staff U.S. News & World Report Article Focuses on FTD In June, Deena Chisholm became AFTD’s Education Program On April 18, U.S. News & World Report brought attention Manager and will work to provide FTD education to healthcare to FTD with a broad overview of the disease, including professionals. She is experienced in developing and implementing quotes from AFTD CEO Susan L-J Dickinson. In the article, health education, tools, programs and interventions that Dickinson is quoted speaking about FTD’s symptoms and promote engagement as well as optimal health and wellness. how they differ from those of Alzheimer’s, the difficulties In her career Deena has worked to develop and implement in getting an FTD diagnosis, and the likelihood that several new initiatives and research focused on dementia care, current estimates of the number of FTD cases in the U.S. violence prevention, medical health education and health equity. (around 50,000-60,000) represent an undercount. She received her Masters of Public Health from West Chester University. Additionally, Maggie Cavanagh joined AFTD in June Taking AFTD’s National Volunteer Program to the as Grassroots Events Coordinator, working with Special Events Next Level Manager Bridget Graham. Her work will focus on AFTD’s Food The AFTD Board and staff recognize the important role for Thought, With Love, and Race Season campaigns, as well as the volunteer network plays, and will continue to play, independent events and Facebook fundraisers. She received a B.S. in ensuring AFTD’s overall success in addressing our in mass communication with a focus in advertising from Towson mission. As a result of the goals set forth in the new University. Strategic Plan, AFTD will see an increase in volunteer engagement in local communities, working to create Additions to the AFTD Board a stronger presence through several initiatives. Plans AFTD is pleased to welcome Kimberly Pang Torres to our Board are in the pipeline to support a new volunteer program of Directors (see above), and to welcome back Jary Larsen. Jary structure as we prepare for growth. We plan to launch was an AFTD Board member from 2010-2017, and served as Board the newly designed volunteer program this fall – stay chair from 2013-2016. tuned for more details. The Association for Frontotemporal Degeneration Volume XVI, Issue 2: Summer 2019 3 4 The Association for Frontotemporal Degeneration Volume XVI, Issue 2: Summer 2019

AFTD Conference... (Continued from page 1) Conference Keynote Speaker Martha Madison “AFTD’s Annual Education Conference Strategic Plan that was is a rich resource for knowledge and approved by the AFTD AFTD CEO Susan L-J Dickinson details connecting with others – and we Board in December, and AFTD’s 2019-2022 Strategic Plan. understand that for many people will guide our work over facing FTD, traveling to the conference the next three years. in a given year may not be an option,” Actor, producer and said AFTD Senior Director of Programs FTD care Sharon Denny. partner Martha “Livestreaming AFTD broadcasted the 2019 Education Madison provided an easy Conference to members of our community delivered the way to ensure throughout the country and the world. conference’s that everyone keynote who wants to ‘attend’ the conference address. Madison, best known for can do so.” strategies and networking, attendees her role as Belle Black on Days of Our reconvened to share Lifelines – During the morning plenary session, Lives, shared candidly how she and anything large or small that helps a mix of her family have found help and sustain them on their FTD journey. persons shared hope diagnosed, since her Video or audio recordings of care partners, mother every conference session are medical Barbara was archived at AFTD’s website: professionals diagnosed Visit www.theaftd.org/2019- and others aftd-education-conference- participated materials to learn more. And see in panel below for information about the discussions conference’s generous sponsors. on the topics “Advances in Understanding FTD,” with behavioral It’s not too early to begin planning “Perspectives on Research,” variant FTD in to attend AFTD’s 2020 Education and “Perspectives on Care and 2008, at age 56. Conference, to be held in Baltimore, Support.” Following an informative and engaging Maryland, on Friday, April 17, 2020! Later, AFTD CEO Susan L-J Dickinson round of afternoon breakout sessions Stay tuned to theaftd.org for more shared highlights from the ambitious focused on clinical issues, care information. The Association for Frontotemporal Degeneration Volume XVI, Issue 2: Summer 2019 5 AFTD Announces Recipients of 2019-2021 Postdoctoral Fellowships By supporting talented young Berkeley, received the inaugural Basic de Recerca de l’Hospital de la Santa investigators during the final stage Science Postdoctoral Fellowship for Creu i Sant Pau in Barcelona, where of their scientific training, AFTD her proposal, “A structural approach to he will complete his postdoctoral Postdoctoral Fellowships lay the rescuing C9orf72 haploinsufficiency in training under the supervision of Jordi groundwork ALS-FTD.” Clarimón Echavarria. for tomorrow’s AFTD Postdoctoral Fellowships Dr. Su, who brings discoveries in FTD lay the groundwork for tomorrow’s to the table research. This discoveries in FTD research. an impressive year marks the background in structural biology, will 10th anniversary of the Postdoctoral utilize an innovative technique known Fellowship program as well as the as cryo-electron microscopy to map first time AFTD has awarded separate the three dimensional structure of fellowships in basic science and two intertwined proteins: the protein clinical research, analogous to our encoded by the C9orf72 gene — the Basic Science and Clinical Research gene most often affected by an FTD- Pilot Grants. associated mutation — and SMCR8, Oriol Dols Icardo, PhD We are grateful for the opportunity a protein accomplice necessary Dr. Icardo will look for changes in to expand this important source of for C9orf72 to function properly. RNA extracted from postmortem funding for the next generation of FTD Compounds that stabilize this protein brain tissue and ultimately from the scientists, and are proud to announce partnership could lead to an effective cerebrospinal fluid (CSF) of persons the recipients of the 2019-2021 treatment for FTD. diagnosed with FTD. Differences in Basic Science and Clinical Research Oriol Dols Icardo, PhD, was awarded the CSF RNA that distinguish specific Postdoctoral Fellowships: first AFTD Clinical Research Fellowship FTD subtypes -- or confirm an FTD Ming-Yuan Su, PhD, a postdoctoral for his proposal, “Identification of an diagnosis -- could be the basis of a fluid fellow in the laboratory of James RNA-based biomarker in FTD.” He is a biomarker and identify new targets for Hurley at the University of California at Postdoctoral Researcher at the Institut RNA-based drugs. AFTD Staff, Board Members Highlight Need for FTD Research at ADRD Summit AFTD staff and Board members, who had behavioral variant FTD. the need to “broaden the conversation along with representatives from the “It took seven years for my husband to around dementia” to mitigate disparities. FTD Disorders Registry, attended be diagnosed, while we were raising “There need to be ways of particularly the Alzheimer’s Disease-Related young children,” Andersen told the addressing how to include folks under Dementias Summit, held March 14 and assembled researchers. “Our children the age of 65 in the mechanisms we are 15 in Bethesda, Maryland. The meeting didn’t get to know the father he could developing,” Denny said, referring to the set the agenda for government-funded have been. Most importantly, without a programs that will eventually form the research in Alzheimer’s-disease related diagnosis, he was not treated with the National Plan on ADRD research. dementias (ADRD), including FTD, for respect he deserved as someone with Sharp concurred. “We now know that the next three years. a terminal illness. So I cannot stress dementia is not an inevitable part of enough how important your work is, The National Institute of Neurological aging, but dementia is still more-or-less and to continue your work for a good Disorders and Stroke (NINDS) hosted considered a disease of the elderly,” he clinical diagnosis.” and organized the Summit. Key AFTD said. “We need to reframe dementia in stakeholders used the opportunity to AFTD Senior Director of Programs a way that is scientifically accurate and shine a light on the realities those living Sharon S. Denny and Program true to the research, and that engages with the condition often face, as well Manager Matthew Sharp both urged the younger portion of the population” as disparities in the knowledge base as scientists from NINDS and members often diagnosed with conditions like FTD. compared to other forms of dementia, of the National Alzheimer’s Project Final recommendations from the Summit such as Alzheimer’s disease. Act (NAPA) Council to include persons will be reviewed by the National Advisory with younger-onset dementias in their Gail Andersen, chair of AFTD’s Board of Neurological Disorders and Stroke research agenda. Directors, spoke about the difficulties she (NANDS) Council in September. Those faced while seeking accurate diagnosis Denny specifically addressed minimum- approved will be forwarded to the NAPA and medical care for her late husband, age cutoffs in certain studies, highlighting Council for incorporation. 6 The Association for Frontotemporal Degeneration Volume XVI, Issue 2: Summer 2019 Those We Honor... Those We Remember Gifts received from February 16, 2019 – June 15, 2019

In Memory of Marie Clodfelter Dale Allen Fitzgerald Pamela Hughes Edward James McAndrew Charles Chuck Cole Judith S. Folkart Nancy Husselman Nichols Jay McCormick James S. Abbott Gail Colfelt Kenneth C. Forbes Darren Michael Jahnke Sheilagh McGuirk Roger Adams Lorraine June Forgey Donna Jay Thistle Duane P. Meihost James Addison Eberle Craig Comstock William Frank Thomas R. Jerrells Michelina R. Mele Laura Ahlbeck Mary Beth Cook David J. Freud William S. John Bill Allen Rosemary Cookie Weiten Suzanne Mersky Gordon Bernard Fridovich Garth Johnson Robin K. Allen Mary P. Copeland Carol Frances Meyer Evelyn Friedman Bobbie Kallemeyn David Amron Maria Cox Mary Jane Micallef Valerie Jeanne Anastasia James Craig Edelen Caroline Gauss Pamela Karimeddini Evan James Midgette Anna Anderson James D. Dabbs Marjorie Gellar Clifford Francis Keating Carol A. Morris Sharon Aochi David Archie Daniel Carolyn Gilbert Kerry Keller Gale W. Moser Robert J. Asam Van Daniels Sofoclis Glykis Karen Keller Colby Joseph Murphy-Mancini Robert M. Ashcraft Charlotte Ann Davis Allan Goodman Ralph Kissel John R. Musser Emerson R. Avery Robert Davis Jeffrey G. Gray Eugene Klein Teresa A. Muzzey Michael Barlow Robert Samuel Davis Jim Greenwood Otto Kostka Mark Nebel Bill Ellis Barrett Laurel Davis-Covin Frances K. Gregory Lucy Kruegl Susan Newhouse Ron Beach Jerome Dell Leonard Darian Griffin Bob Kunesh Dawn Noles Ian Beattie Anthony DelVecchio John Griffin Robert Kunesh Scott Norman Caroline D. Bell James DePauw Patricia Griffin Julia Lancaster Hilliard Nehomi Nunez Mary Grimm Lois A. Lenahan Mimi Oblinger Freeman Paul Berte Virginia Desch Gulledge Edward Gross Lynn H. Lessmann Larry Olivieri Brooks Bertram William J. DeVoti David Haines Arnette Lester Lawrence Carl Olivieri Michael Best Julie Marie Dickmeyer Dolores A. Bisgrove Zerhusen John Hamilton Harold B. Lester Ed Opengart Sandra Bishop Anthony J. Diglio Darrel Hansen Robert N. Levin Diane Osborne Lester Blattner Axel Dikkers Larry Hargis Ernest A. L’Heureux Nancy Packard John Michael “Mickey” Boles Pamela Dircksen Therese M. Harlett Paul L’Heureux Janet Panzer Mary Ann Bordewick Ernest Dovidio Kevin Harvey Paul N. L’Heureux Paul Parenti Catherine Broer George Scott Downing Robert Hatfield Raymond E. L’Heureux James E. Peifer Donald L. Brown Ronald Duncan Steven John Hecht Denise L’Heureux Linda Pelke Fenwick Phillipon Herman F. Brown Edward Durst Bob Heilskov John D. Pergolski Paula L’Heureux Scott Michelle Brown John Dystrup Robert L. Hermann Camilla Perry Susan Katherine Light William Brunk Gail Edwards Billy G. Hill Robert William Peterson Inger Lindhe Michael J. Burns Jeannette Lyne Ekstrand Billy Hill Christopher Pfaendtner Patricia Linton Cindy Cardosi Barbara Elazari Julia L. Hilliard MacFadgen Lan Pham Cao Willis H. Caterson Frank Engelkraut III Kathy Hirschy Muriel Lisignoli Judith Rose “Judy” Pickett JoAnn Chelist Donald Erdy Dale Hitchcock Muriel Lisionoli Shelly Piltch Michele Chollet George Fain Willis H. Hogan Fannie Litow Albert Anthony Pondelli Joanne Christman Mark Falcone Robert Hohenstein Felix Lopez John Popiel Marie Cicconi Harold Fechtner James David Hopper Phyllis Malloy Carolyn Porter Craig Cline Deborah Horn Phyllis Feigenbaum Idelle Marglous Cheryl Kay Pratt Linder Douglas Cline Juliann M. Horvath Maria Ragonese Linda J. Fiore Watson M. Marshall Lawrence T. Cline Linda K. Hubbard Anna Flinchum Rathbone Palmer (Anne) Fishwick June Marie Massarella Rob Cline Posvar Emily Huey Robert Matusiak George E. Rector The Association for Frontotemporal Degeneration Volume XVI, Issue 2: Summer 2019 7

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

Elaine Richmond Karen Stone Rowe Jeffrey E. Abraham Mary Grassinger Deborah J. Page Debbie Ridgely Seymour Stony Sarokin Lydia Adalian Stephen J. Greenwalt Kathy Parenti Steve Riedner Dennis P. Strobel Rebecca Adams Alice Guiney Kandice Perry Carol Ann Rockett Joan Stuit Michael J. Angello Marguerite Harrington Julia Pfeffer Frederick John Roth III Dave Sundin Eduardo Bastida Harold Hedaya Kimberly Phares Sally Roy Wendy Suzman Kathleen G. Beal Suzy Heffron Elisabeth Raine Reyburn Lee Ruhl Robert J. Sykes, Jr. Roy Bohr Victoria Heller Karen Reed Richard Ruhl Albert Sylanski John Brannen Beverly Hernandez Janet F. Reilly John Russell Sankey Marcia Ann Tambellini Lauren Brasse Lee Holloway Gerald Richard Janet Lee Ryan Sheri Taylor Carmen A. Brutico Harold Horwitz Donna Robinson Stephen Gary Sackel Mary F. Terry Brian Buckley Dixie Jameson Ellen Rogoff Jack Safar Laurence Thomas Virginia Carlin Kay Jones Susan Roper Obryant Paula Salzano Loreen Ruth Thomas Mike Carney Marjorie Jones Ann Roth Matthew Sanderson Matherne Randall Thomas Peter Casey Kristin Keefer Patrica Ryan Angelo William Savino Stephen M. Tipton Su-Ling Chang Larry Klein Kirk Ryder Richard J. Scanu Beth Townsend Judy Christopher Ken Kulina Mike Samuels Henry M. Schaffer Karen Traxler Brandon Cline Michelle Kyriacou Marianne Sanders Nancy Marie Scholz Peggy Ann Turner Laura Colangelo Karen Ladenheim Gonzalo Santana Evan Schrier George Van Son Judy Comstock Matt Ladenheim Vincent Scalen Jeffrey Van Son Popkin Shenian Dave Conant Christopher Lane Joyce Rose Shenian James Vowell Stephen G. Sherman Ed Costello Paul Lester Joan R. Simon Dan Waber Willard Shine Larry D. Coufal Tracey Lind Roberta Sitler Judith Waldow Gregory Dean Short Connie Crites Caron Lukens James W. Smiley John Walker Wesley Shreve Connie Daniels EK Magion Susan A. Smith Ricky Lee Walling Connie L. Sidder Lisa Dineen Travis Martin Ellen Solomon Mike Walter Richard Siegel Tami Dosenbach Day-Miller CJ Martino Cathy Sperrick Jane V. Ward Joanne M. Silva Laynie Dratch Faye Billie McCormick Mary Stone Susan Watson Semahat Sinharoy Judith Erlick Joseph Meehan Jeanette Stoothoff Jill Weatherill Carole Sloan Bill Fehon Michael A. Minelli Becky Tinsley Stanford Weiss Gary Jean Slough Zandra Flemister The Minelli Family Theresa Torrance Vernon Westmark Robert G. Smith Jimmy Fort Bridget Moran-McCabe Joseph Trotto Barbara Whitmarsh David V. Sohan Marian Frauenglass Mark Moriarty Helen Van Son Linda Wille Assunta Sorrentino Paula Frost Charlotte Murray Elvira Vera Ellen Williams Robert A. Sparn Margaret Fry Donald Newhouse Tiemo von Zweck Lalla Woerner Joy Spartin Bowen Anne G. Scott Norman Marianne Waldman Susie Sprouse Anne B. Geremia Chole Norman Doug Watt Robert Steven Winters In Honor of Ginny Glasco Verden Norman Francis Whitcraft Susan Stevenson Yezenia Gonzales Robaina Richard M. Olivieri Judy Windhorst David E. Stikkers Michael Anthony Abbott Howard Gould Rhoda M. Oswald 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 XVI, Issue 2: Summer 2019

60 Minutes Brings FTD Awareness (Continued from page 1)

Reporter Bill Whitaker presents a story on FTD, which aired on 60 Minutes on May 5.

Bill Whitaker accompanies Amy Johnson on a visit to the facility where her husband, Mark, lives. Mark has FTD; the Johnsons have four young children together.

The full 60 Minutes piece is available to view via piece, and is available to watch on YouTube, CBS All Access, a subscription-based service. A along with a May 6 CBS This Morning interview 60 Minutes Overtime segment, which features with Dr. Ted Huey of Columbia University and Hartman and reporter Bill Whitaker, provides AFTD’s Medical Advisory Council. Visit tinyurl. a behind-the-scenes look at the making of the com/AFTD60Mins for more information. The Association for Frontotemporal Degeneration Volume XVI, Issue 2: Summer 2019 9 Giving a Hand to Our Helping Hands! AFTD Volunteers: Kati Woodford and Marlene McKian AFTD offers a young-adult Facebook What have you learned from this AFTD welcomes Marlene! group for people in their 20s and 30s volunteer position? AFTD Online Community Coordinator who have a family member or loved I learned the importance of support and one with FTD. This group is “secret,” Lauren Gauthier shared, “Our having a community to connect with Facebook-based support groups are an meaning it cannot be found through a when you are experiencing challenging Facebook search, and is administered integral aspect of the support system situations in life. Young adults, that we offer to our community. by a volunteer who is also a young particularly, have dwindling access to adult with FTD in their life. Because of the unique challenges faced natural sources of support. I found it by young adults with an FTD diagnosis Over three years ago, Kati Woodford extremely empowering to use social in their family, having a safe place to talk (NC) agreed to take on the volunteer media to unite people with a common through those challenges with others administrator role for the group. AFTD experience to support one another who understand is essential. Kati’s is forever grateful for her service! We through the difficulties of FTD. contributions to the group greatly asked Kati about her experience. Kati has now turned the reins over to a enriched the experience for others, and we are extremely grateful for her years Why volunteer in this role? new volunteer administrator, Marlene McKian (MI), who is of service. As Kati steps out While I was a full-time student in picking up where Kati left off. of her volunteer position, I’m a masters program, interning and Marlene raised her hand to excited for the opportunity working part-time, AFTD provided administer the young-adult to work with Marlene, and me the opportunity to accept a flexible Facebook group because she to see what unique gifts and volunteer role that I could complete wanted to give back and help perspectives she brings to remotely, while still connecting with a connect others who, like the role.” cause close to my heart. I feel honored her, have FTD in their lives. that AFTD recognized my desire to To learn more about the Both her mom and uncle had help while still respecting the other young-adult Facebook group bvFTD. commitments I had in my life. I have and the steps necessary to Marlene wants to help make Marlene McKian with join, visit the Support for Care immense pride in my experience as her son, Ezra an administrator, mostly due to the the journey less isolating for Partners section of AFTD’s gratitude I received from my family. those going through it now. website. AFTD Recognizes Volunteers with First Volunteer Appreciation Dinner On May 2 in Los Angeles, AFTD hosted • 62% of the its first Volunteer Appreciation Dinner. volunteers at AFTD CEO Susan Dickinson and dinner had Volunteer Manager Kerri Keane joined participated several other AFTD staff members to in at least recognize and thank all of the volunteers two types who helped to make a difference this of volunteer past year in our shared mission to find activities, providing help and share hope. • AFTD Meet & Greets reached over 140 valuable and varied contributions toward people. Meet & Greets are opportunities With more than 60 volunteers in our mission. for volunteers to plan and facilitate attendance, the dinner gave our volunteer • In the past year, 36 volunteers informal gatherings to bring together community the opportunity to meet and represented AFTD at 47 table settings, people whose lives have been touched by connect with reaching more FTD. fellow volunteers, The dinner gave our volunteer community than 18,000 people • 101 support group volunteers created to spend time the opportunity to meet and connect with (a 260% increase a supportive space for hundreds of care with staff, and to fellow volunteers, to spend time with staff, from last year!). partners monthly. simply enjoy a fun and to simply enjoy a fun evening. Table settings evening. let volunteers • Last year was the most successful to represent AFTD at community events date for our Grassroots Events Program, The event included a presentation by and conferences, introducing FTD and with volunteers raising over $640,000! Kerri, in which she highlighted some sharing AFTD information with various • The number of volunteers who went volunteer accomplishments from the audiences, many of whom are learning through our orientation more than past year, including: about FTD for the first time. doubled, from 27 to 59. 10 The Association for Frontotemporal Degeneration Volume XVI, Issue 2: Summer 2019

Race Season The AFTD-Team Race Season had an early start this year after expanding from a seasonal to year-round campaign! Two great races are already in the books: The Austin Marathon (TX) and the Colfax Marathon (Denver, CO). Combining numbers from those two races, we’ve already had 106 people run on the AFTD-Team, raising more than $12,800 towards AFTD’s mission. In addition to going the distance, some AFTD-Team members took their participation beyond the finish line by raising funds for AFTD.

Austin Marathon Colfax Marathon Staci Mickler Fenoglio Family Racers Gretchen Samuels Stacey Fletcher Team Skattum Edith Williams

Don’t hang up your sneakers yet though—there are still more races to come! Below is a list of additional races the AFTD-Team is participating in this season: • TCS City Marathon (New York, NY): November 3, 2019 • Philadelphia Marathon (Philadelphia, PA): November 23-24, 2019 • Dallas Marathon (Dallas, TX): December 14-15, 2019 The Association for Frontotemporal Degeneration Volume XVI, Issue 2: Summer 2019 11

Reaching New Casual for a Cause: Catelyn Griffith of North Heights: Jeff Hunter Carolina hosted a dress-down day at her school in honor of from California climbed her father, who has FTD. She gave an informational speech to Denali—the tallest mountain her classmates about FTD and her family’s journey with the in North America—on a three- disease. She raised $2,554 for AFTD—a successful fundraiser week-long mountaineering at any age, but especially impressive for an eighth grader. expedition in honor of his father, who passed away from FTD in 2017. Leaving on the Half Marathon, Full two-year anniversary of his father’s passing, Jeff eventually reached a personal altitude record of 17,300 feet. As if his Hearts: Melissa SantaCroce of climb wasn’t impressive enough, Jeff also fundraised over New York and her two best friends, $32,000 to help advance research through AFTD. Meredith Corvo and Jennifer Lesnick, ran the Fairfield, CT Half Marathon in honor of her father, who was diagnosed Quest for the Cure: The Robert M. Hatfield with PPA in 2016. They also teamed up Foundation in Florida hosted the eighth annual Quest for to raise a total of $2,853 for AFTD. the Cure Golf Tournament at the Bardmoor Golf & Tennis Club. Pam Hatfield and her son, AFTD Board member Matt Hatfield, founded the organization in memory of Pam’s Raising the Bar(s): husband and Matt’s father, Robert, who passed away from Greg Dickinson of New York FTD in 2010. This year’s event raised $7,900, increasing their hosted a charity bar crawl in the total tournament giving history to $57,900 donated to AFTD. East Village to benefit AFTD. Participants contributed $50 to take part in the crawl, which Chris Costello of Jam Master Day: included drink specials at three Massachusetts hosted an event at the Cambridge Boat popular bars. The event raised a total of $2,000 donated to AFTD. House in honor of his brother Ed, who was diagnosed with FTD two years ago. The event, called “Ed’s Jam Master Session”, featured live music, food and drinks—a great Denim Momentum: Gerda Spears of Colorado combination that helped to raise $6,163 for AFTD. held a jeans day at her office, RBC Wealth Management. Everyone was casual and comfortable, and helped raise $1,442 for AFTD. Fund-Riesling: Allyson Schrier of Washington hosted a Celebration of Life for her husband, Chattanooga Can-Do: Evan, who passed away from FTD in David Biddle of Ohio participated in February. Allyson had wine bottles the IRONMAN 70.3 Chattanooga labeled with his picture as a “thank in May in honor of his wife, who you” for attendees who donated to was diagnosed with bvFTD in 2016. AFTD. Over 100 people attended and His eldest grandson, Levi, raced six cases of wine were taken home, totaling $3,585 donated alongside him. In the lead-up to the to AFTD in Evan’s memory. big day, David raised $1,234 for AFTD.

Doug Ekstrand of Colorado hosted a fundraising page in memory of his wife, Jeannette, who passed away from FTD/ ALS this April. She was the mother of Danielle, Charlie and Haley; and identical twin sister of Cathy Pfeifer, who also passed away from FTD/ALS in 2016. (Cathy was the wife of AFTD Board member David Pfeifer.) The page raised $1,155. Prsrt. Std. U.S. Postage PAID Williamsport, PA Permit #33 Radnor Station Bldg. 2, Suite 320 290 King of Prussia Road Radnor, PA 19087 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 Gail Andersen Steve Bellwoar Jary Larsen, Ph.D. California Chair, Ohio Mario Mendez, M.D., Ph.D. Walter A. Kukull, Ph.D. Rick Childs Paul Lester Chair, University of University of Washington David Pfeifer Massachusetts North Carolina California, Los Angeles Vice Chair, Colorado Virginia M.-Y. Lee, Ph.D. Sandra Grow Kathy Mele Ian R.A. Mackenzie, M.D. University of Pennsylvania Brian Rose Ohio New York Chair Elect, University of Treasurer, New York Matt Hatfield Michael Stowell, Ph.D. British Columbia, Vancouver Carol F. Lippa, M.D. Thomas Jefferson University Stephen Fenoglio Florida Colorado Kimberly Pang Torres Bradley F. Boeve, M.D. Recording Secretary, Texas Daniel Hedaya Mayo Clinic, Rochester Irene Litvan, M.D. New York University of California, San Diego Helen-Ann Comstock Kacy Kunesh Beth Walter Bradford C. Dickerson, M.D. Founder, Pennsylvania Texas California Harvard University M.-Marsel Mesulam, M.D. Northwestern University Dennis W. Dickson, M.D. Mayo Clinic, Jacksonville Bruce L. Miller, M.D. Staff University of California, Karen Duff, Ph.D. San Francisco Susan L-J Dickinson, M.S. Bridget Graham Jeff Thompson Columbia University Chief Executive Officer Special Events Manager Office Manager Jill Murrell, Ph.D. Bernardino Ghetti, M.D. Indiana University Sharon S. Denny, M.A. Kerri Keane, M.S.W. Maggie Cavanagh Indiana University Volunteer Manager Senior Director of Programs Grassroots Events Coordinator Chiadi Onyike, M.D. Jill Goldman, M.S. Johns Hopkins University Ben C. Freeman Amanda Knight Lauren Gauthier Columbia University Development Manager Development & Online Community Coordinator Creighton Phelps, Ph.D. Communications Director Murray Grossman, M.D., Ed.D. Bridget Moran-McCabe, M.P.H. Ann Schoonover, M.S.W., L.S.W. University of Pennsylvania Support Services Manager Rosa Rademakers, Ph.D. Christine Stevens, M.B.A. HelpLine Advisor Mayo Clinic, Jacksonville Chief Financial Officer Edward Huey, M.D. Debra Niehoff, Ph.D. Emma Tomasetti Columbia University Research Manager Howard Rosen, M.D. Nadine Tatton, Ph.D. Development Assistant Michael Hutton, Ph.D. University of California, Scientific Director Matt Ozga Elizabeth R. Young Eli Lilly & Co. UK San Francisco Deena Chisholm, M.P.H. Communications Manager Executive Assistant David S. Knopman, M.D. John Q. Trojanowski, M.D., Ph.D. Education Program Matthew Sharp, M.S.S. Mayo Clinic, Rochester University of Pennsylvania Manager Program Manager 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.