Volume XIV, Issue 3 Fall 2017 Announcing the David Geffen Fund at AFTD major gift from the David Geffen to honor Si Newhouse of Advance condition,” Geffen said. AFoundation will help AFTD Publications and chairman of Condé The David Geffen Fund will provide deepen its commitment to raising Nast. Newhouse had the primary unrestricted support for AFTD – awareness, funding groundbreaking progressive aphasia (PPA) variant helping to advance the full scope of our research, and supporting people living of FTD; he died on October 1. The mission. Geffen served as a co-chair with FTD. Geffen established the fund of AFTD’s Hope Rising Benefit, as AFTD CEO Susan L-J Dickinson to honor Si Newhouse. did Si’s brother Donald Newhouse. announced the creation of the Donald’s life has been twice touched David Geffen Fund at our Hope by FTD: In 2015, his wife, Susan, died Rising Benefit in City on David Geffen Foundation will join 12 years after being diagnosed with October 12. Over the next 10 years, the Samuel I. Newhouse Foundation PPA. contributions to the fund will provide in providing the contributions to this $2 million annually to support AFTD’s fund over the next ten years. Donald has since become a critical ally mission. [Read more about the 2017 and generous benefactor of AFTD. In “This fund will enable AFTD to Hope Rising Benefit on Page 8.] continue to lead the way in expanding an October 23 interview, he explained Geffen, a film and music producer and our understanding and treatment how he became involved with AFTD: philanthropist, established the fund of this horrible neurodegenerative (Continued on page 8)

Inside This Issue AFTD Study Shows Economic Burden of FTD he average annual costs of FTD are the numbers to prove it,” said AFTD AFTD Pilot Grants...... 2 Tnearly double those associated with CEO Susan L-J Dickinson. “This study News Briefs...... 2 Alzheimer’s disease, according to a new shows that the financial toll of FTD – study funded and co-written by AFTD. nearly $120,000 per year – is even more Fall Appeal...... 3 The study, entitled “The Social and devastating than we imagined.” World FTD Awareness...4 Economic Burden of Frontotemporal Data were gathered from 674 FTD Degeneration,” appears in the November Biomarkers Initiative.....4 caregivers, who filled out a detailed online 14 issue of survey featuring Economic Burden (cont.)...5 Neurology, and “The financial toll of FTD is even more questions about it can also be devastating than we imagined,” said Donations...... 6-7 the ways in accessed for AFTD CEO Susan L-J Dickinson. which FTD has Hope Rising...... 8 free online. It is impacted their the first study Helping Hands...... 9 finances, health and social lives. That data published in the U.S. to focus solely on was compiled into a study by Dr. James E. Meet & Greets...... 9 quantifying the economic impact of FTD. Galvin of the Charles E. Schmidt College Food For Thought...... 10 “For years, we have known about the of Medicine at Atlantic University, extraordinary economic burden shouldered Dr. David H. Howard of Emory University The AFTD-Team...... 11 by FTD caregivers, but now we have and AFTD staff. (Continued on page 5) 2 The Association for Frontotemporal Degeneration n Volume XIV, Issue 3: Fall 2017 Money Well Spent: AFTD Pilot Grants

rganizations that fund scientific early-career investigators. least one such article. And these Oresearch are putting a growing publications have made notable Between 2005 and 2016, AFTD emphasis on accountability – evidence contributions to FTD research: Half that their grant programs are meeting awarded 17 Pilot Grants totaling have been cited by other researchers objectives and advancing their $955,000 to investigators from the more often than expected for a paper research agendas. The evaluation of U.S., Canada, and four European in the field. research performance – the scientific countries. equivalent of the return on investment Initial results of our ROI analysis “The impact of the Pilot Grant (ROI) analysis routine in program is clearly documented by business settings – can inform Pilot grants have succeeded in attracting outstanding early-career the publications and the success strategic planning and identify researchers to FTD research. of the grantees in being awarded researchers who are moving the additional funding to continue the field forward. work enabled by AFTD,” notes John From 2005 to 2016, AFTD invested confirm that the Pilot Grant program Whitmarsh, PhD, who chairs the $4.9 million from our donors into has been a worthwhile investment AFTD Board’s Research Committee. FTD research. To better understand for AFTD and our community. “Most importantly,” he adds, “pilot the contributions of the projects we Collectively, recipients attracted Grants have succeeded in attracting fund, AFTD initiated an ROI analysis $7.53 million in follow-on funding, of our own research portfolio in indicating deepening work into outstanding early-career researchers January 2017, focusing first on the advancing FTD research. They to FTD research.” These researchers organization’s Pilot Grant program, published a total of 26 grant-related are key allies in our community’s which provides “seed funding” to articles, with 76% publishing at work to achieve a world without FTD. AFTD News Briefs

AFTD Nominee Joins Columbia Trial on Behavioral FTSG Conference to Be Held March 2018 Dementia Advisory Council Symptoms in FTD The Frontotemporal Degeneration Treatment On September 28, Katie Brandt In collaboration with the Study Group (FTSG) will convene for a conference was appointed to the federal Alzheimer’s Drug Discovery on March 8-9 in , DC. Over the Advisory Council on Alzheimer’s Foundation, Columbia University course of a day and a half of programming, the Research, Care, and Services. AFTD is sponsoring a clinical trial to test the effects of low doses of lithium FTSG will work to strategize ways to accelerate nominated Katie to serve on the the development of effective treatments for FTD council, which advises the secretary on the behavioral symptoms of of the Department of Health persons diagnosed with FTD. and related disorders by promoting scientific and Human Services on federal Investigators are recruiting interactions and collaborations between academia programs that affect people with volunteer participants who have and industry. AFTD is a co-founder of FTSG. various forms of dementia, including been diagnosed with behavioral variant FTD, semantic variant FTD. Katie’s late husband Mike was primary progressive aphasia (PPA) New AFTD Regional Coordinator Volunteer diagnosed with FTD when he was or agrammatic, non-fluent PPA just 29 years old. She has remained with behavioral symptoms for AFTD is excited to announce the newest addition a passionate advocate for the FTD participation in the recurring trial. to our Volunteer Leadership Team: AFTD Regional community, facilitating a support A care partner will be required Coordinator Volunteer Rachel Castellanos. Rachel group in Boston, appearing recently to provide information about has joined Regional Coordinator Volunteer Zoy in an AFTD #ThinkFTD awareness the patient during interviews. Kocian in overseeing the South Central Region. video, and working as a community For more information, contact resource specialist at Hannah Silverman at hs2971@ Rachel lives in and has volunteered for General Hospital’s Frontotemporal cumc.columbia.edu or by calling AFTD in a variety of ways, including planning a Disorders Unit. (212) 305-6284. successful Louisiana Meet & Greet. The Association for Frontotemporal Degeneration n Volume XIV, Issue 3: Fall 2017 3 4 The Association for Frontotemporal Degeneration n Volume XIV, Issue 3: Fall 2017 World FTD Awareness Week Rallies Community eople affected by FTD from around the globe raised exists…” Madison said in her video. Madison’s mother was Ptheir voices during the third annual World FTD diagnosed with behavioral variant FTD in 2008. Awareness Week, encouraging the world “We need people to really pay attention to #ThinkFTD. to the fact that this is a unique disease, From September 24 through October and we need all hands on deck,” added 1, 2017, advocates in ten countries Madison, best known for her recurring held events and took to social media to role on Days of Our Lives. spread FTD awareness. AFTD debuted AFTD encourages others to share their its “Think It’s Alzheimer’s? Think FTD stories on social media using the Again” campaign. In a series of videos, hashtags #ThinkFTD and #EndFTD. created in collaboration with Discovery Communications and Image Factory DC, Bookending World FTD Awareness Week, prominent members of our community two full-page ads ran in the September told stories of their loved ones’ FTD 24 and October 1 issues of the Sunday journeys. Actress Martha Madison and New York Times. Made possible by a sports broadcaster Wes Durham, as well generous AFTD donor, these ads put the as AFTD ally Olivia Goldring, AFTD #ThinkFTD message before hundreds Board member Danny Hedaya, former of thousands of Times readers. AFTD Board member Sylvia Mackey, and volunteer Jody Zorn designed the ads; one advocate Katie Brandt shared videos, is featured on this page. which can be found on AFTD’s YouTube FTD deserves a global response – and AFTD thanks all channel, www.youtube.com/TheAFTDorg. of those who made their voices heard to help ensure that “The one thing I want people to know about FTD is that it it gets one. FTD Biomarkers Initiative Holds First Investigators Meeting

iomarkers — biological experts for the first FTD Biomarkers biomarkers are used in each phase Bcharacteristics used to diagnose Initiative Investigators Meeting, held of drug development and the variety a disease, track its progression, or October 9-11 at Tarrytown House of resources available to support monitor the response to treatment — Estate and Conference Center in biomarker research, including the top the FTD scientific community’s Tarrytown, New York. National Institute of Neurological “most wanted” list of research tools. Research teams headed by the five Disorders and Stroke’s Human Cell AFTD is playing a leading role in recipients of the first FTD Biomarkers and Data Repository, biological meeting this urgent need through Initiative awards presented work in samples and imaging data compiled its FTD Biomarkers Initiative, made progress. The five award recipients by the Europe-based GenFI network possible by a donation from the taking part were Randall Bateman, (Genetic FTD Initiative) and Samuel I. Newhouse Foundation. Washington University; Christian the NIH-supported ARTFL and Dedicated to funding biomarker Haass, Ludwig-Maximilians LEFFTDS networks in the U.S. discovery and development, the FTD University; Leonard Petrucelli, The conference concluded with a Biomarkers Initiative will advance Mayo Clinic-Jacksonville; Jonathan discussion of current challenges research by promoting the open Rohrer, University College London; and opportunities in FTD imaging sharing of data, resources, and ideas. and Judith Steen, Boston Children’s biomarkers, and left researchers with Hospital. This fall, AFTD brought together new tools and deeper collaborations in current award recipients, scientific Invited guest speakers shared their their work to advance FTD diagnosis, advisory board members, and guest experiences about the pivotal ways and pave the way for new treatments. The Association for Frontotemporal Degeneration n Volume XIV, Issue 3: Fall 2017 5

Economic Burden of FTD (Continued from page 1) FTD is costlier than Alzheimer’s because decisions – 58% of caregivers reported One out of three caregivers stops working. it tends to affect that their loved one had made Nearly 40 percent of caregivers surveyed people earlier in Twelve months bad choices with money. Other said they were no longer employed $99K before an FTD life, during their diagnosis, FTD-related costs included following the patient’s diagnosis. Those prime earning most families reported a crises involving emergency still working reported a median loss of y e a r s , t h e household department services (19% seven full days of work over the previous study’s authors income in the $75,000 – of respondents), emergency four weeks because of FTD-related issues. said. FTD is the $50K $99,000 medical services (11%), urgent most common range. Twelve “By driving patients and caregivers out months after psychiatric care (8%) and police dementia for diagnosis, intervention (6%). of the workforce, often during their people under income fell peak earning years, FTD’s impact can as much as age 60. 50 percent. The health of caregivers be felt long after the person diagnosed declines. Two out of three (67 The study percent) FTD shows that an FTD diagnosis can cause caregivers Please help us spread the word household income to fall by as much r e p o r t e d about this ground-breaking study! as 50%. Median household income 12 notable Visit theaftd.org/learnmore and download our months prior to an FTD diagnosis was declines in talking points and infographic. Share them with your in the $75,000-$99,000 range, but 12 their health. family, friends and professional networks to help the months after diagnosis, it fell to the More than world better understand the devastation of FTD. $50,000-$59,000 range. h a l f (53 Miscellaneous costs add up. FTD’s percent) said they incurred higher has passed on,” Dr. Galvin, the study’s symptoms include poor financial personal health care costs. lead author, said.

Nancy Carlson Mary Ann Coon Photo by: Craig Perman Mary Ann first met Bruce Coon FTD had a direct effect on when they were both young the finances of children’s book teenagers. Eventually they married author and illustrator Nancy and built a life and a family together. Carlson. Her husband Barry Bruce owned a successful excavating was her business manager, and company and made good money. “he did everything – paid the bills, did the insurance, The couple had just finished building their dream home when negotiated contracts with publishers, everything,” she Bruce began acting recklessly, particularly with money. Mary Ann said. “I never asked that much about it, plus I didn’t became increasingly worried, but Bruce always dismissed her fears. want to know.” After an old high school friend asked Mary Ann if her husband Barry began making uncharacteristic errors, including ever intended on paying back the tens of thousands of dollars he neglecting to pay credit card bills. Unbeknownst to had borrowed, she knew something was seriously wrong. Nancy, he began borrowing money from friends and Bruce had to leave his job and required full-time care – first took out two additional mortgages on their house; from Mary Ann, then from an assisted care facility that cost he filed income taxes for eight years but failed to pay thousands of dollars a month. Mary Ann says that they spent them. Nancy added: “He alienated my publishers by just down their savings and had to borrow money from her parents. being odd and not following through. That’s a big loss They tried to live as frugally as possible – “We were using dish of income for me.” soap to wash our clothes. Dinner was spaghetti or eggs every When Barry was diagnosed with behavioral variant FTD night.” But they still ended up having to sell their dream house. in 2012, it came almost as a relief, since it explained his Bruce died in 2015 at the age of 53, and Mary Ann still feels reckless financial behavior. Getting the diagnosis “made the financial impact of her family’s FTD journey. She wanted all the difference in the world.” to put her sons through college, and help her daughter buy a All told, Nancy estimates that Barry’s FTD cost the house with her fiancé. But she can’t. “All those things that as family close to a half a million dollars. He died in late a mother I wish I could do – I just don’t have the money to do 2016, four years after he was diagnosed. it,” she said. 6 The Association for Frontotemporal Degeneration n Volume XIV, Issue 3: Fall 2017

Donations Honor Loved Ones Gifts received from June 16 – October 15, 2017 In Memory Of Blanche Edmondson John Kretekos Selig Richard Popik James S. Abbott Don Edmondson Harry Kulkowitz Hershel E. Portnoy George Attwell Sidney H. Edwards Frances Kupczyk Campbell Lanier Randall III Dorothy J. Allen Mary Einhorn Terry B. Lahita Laurie Reed John Auld Mark Eissler Peter J. Larsen Susan Reilley Carol Baker Stuart Elfenbein Ronald M. Lauer Charlene Louise Rice Barbara Basla Frank Engelkraut III Arthur Elwood Leathley Roy Riney James Dean Bedillion Michael E. Fenoglio Rita Yen Lee James Rizzo Caroline D. Bell Keith Fitzgerald Roger Leedy Harvey Roberts III Carol Ann Rockett Laurene “Laurie” Marie Calvin LeRoy Fox Michael A. Lemon David Rose Bengtson Gerald E. Franks Lois A. Lenahan Arnette Lester Brian Rosequist Martin Berenson Reon Friesen Brad Gant Bruce Leuschen Karen Stone Rowe Paul Berte Mary “Mimi” Monica Garber John Hamilton Lewis Tom Ruhlman Charles Leroy Biehler Allan Garfield Donald Ray Lucke Seymour Sarokin Lee Biehler Paul Weldon Gatlin Barbee Lunder Arpiar G. Saunders Jr. Sandra Bishop Katherine Holzman Goldblatt Dale W. Lutz Michael Savolt Deven Black Marylin Goldner Patricia Ann Lyman Paul T. Schleyer Shirley Blumberg Laura Ann Gordon Barbara Sue Lynch John “Jack” Schloerb Cindy Boehmer John J. Gorman Marian Magill Sandy Louis Sciulli Gordon Boerboom David Gragg Kathy Majeres Paula (L’Heureux) Scott Stephen Bradley Marsha Corns Greenlee Gerald Majka Edward Selinger Ann Bretscher Carolyn Sue Gulledge Phyllis Malloy Raza M. Shaikh Bevan Broom Edward Hall Thomas John Malone Popkin Shenian Barbee Lee Bruce Therese M. Harlett John K. Manly-Power Ned James Shepherd Robert Buchheit Richard Hanechak Susan Marcus Al Shoberg Martha “Marty” Butler Pamela Rose Harvalis Joanne Martin Wendall E. Short Barry Lynn Carter Kerry D. Hayes Simone Jo Anne Martin George F. Sidoris Willis H. Caterson Elizabeth P. Head Robert Matusiak Carol Simon Anthony Henry Cimino Steven John Hecht Michael T. McCarthy Michael Skibo Linda Arlene Clark Harold Hedaya Ronald McCarthy Mark Smith Lawrence T. Cline Robert L. Hermann Janie McManus Cathy Ann Manley Snell Gail Colfelt Michael Hershkowitz Loretta M. McManus Dawn Ellen Stadler Vincent Condon Herbert “Andy” Higham Bill McNamer Sandra Lee Staley Mary Lou (Brown) Conley Jean Ann Hillje Carol Frances Meyer Gary Thomas Stevenson Edward Bruce Coon Randal Hillman Paul D. Miller Joan Stuit Frank William Crast Ken Hinze Carl Moretti Wendy Summerfield John Cunningham Mary Hoeve Perry Mullins Dave Sundin David Archie Daniel Garfield “Pete” H. Horn Si Newhouse Wendy Suzman Frederick J. Davis Linda Howerton Susan Newhouse Marie Sykes Joyce Davis Richard Jamison Patricia “Tish” Ellen Robert J. Sykes Jr. Laurel Davis-Covin William S. John Niffenegger Richard “Dick” Frank Thaller Joanann DeFiglia Robert E. Johnson Timothy H. O’Leary Calvin L. Thomas Joe Dekat Phillip Kamish Connor James Orr Stephen M. Tipton Wilfred Denise Peggy Deans Keralitz Tamara S. Pamer Peter V. Tishman Rose L. DePino Joyce Kinzie Jeffrey Peffer Gretchen Sue Toles Bryan Lee Deuermeyer Eugene Klein James “Jim” E. Peifer Haven Toothman Clarence Raymond Dietrick Ken Klein Camilla Perry Jill Dixon Triemer George Scott Downing Louise Koenig Joseph Pessah Bonnie Lee Utz Jackie Duet Saundra Sue Pack Konicki Mary Catherine Pfeifer Richard Van Dyke Pamela Duncan Robert L. Kopp Alan Stephen Phillips Michael V. Vecchio Ronald Duncan Robert G. Koster Elliott Philofsky Nelson F. Vitorino Kyle Steven Durkin Otto Kostka Peggy Pines Ellis G. Wachs The Association for Frontotemporal Degeneration n Volume XIV, Issue 3: Fall 2017 7

AFTD is grateful for these gifts, which fund research, education and support. Sherry Wagner Carmen A. Brutico Gaylord Horn Thomas Nash Beverly Waite Matt Carroll & Lea Dunne Martha Horn Donald Newhouse Christine Walker on their wedding Gary Hosley Jackie Pang Michael G. Wallis Su-Ling Chang Claud E. Ivie Ronald Price Jane V. Ward Beatrice “Beezie” Childs Marvin Johnson Mary Rand Dwight H. Warrington Sr. Spencer Cline on his Miriam Silbert Joseph Carol Rao Jerry S. Watson graduation Marvin Kamin for his special Kenneth L. Ray Frank “Chip” Taylor Webster Charles Cole birthday Brian Rose Robert Wheeler Rey Contreras Charlie Krilow Donna Rose Barbara Whitmarsh Tom Cotton Donna Kunesh Dorothy Rowley Robert Steven Winters Susan Coyl Michelle Kyriacou Patricia Ryan Bob Crow Alison Lassale Stephen Carl Wynn Kirk Ryder Robert V. Crow Jr. Emily Levy Chris Edmondson Yurkanan Lillian Sackel Bob Crowe Lynn Lower Harry Raymont Zeigler Matthew Salzano Connie Daniels John Mackey Julie Marie Dickmeyer Charles E. Schumer Connor Depasse Ron Martin Zerhusen Joan R. Simon John Farwell David Mason Roberta Sitler Jeannie L. Frank Dan Matthews In Honor Of Paula Frost Edward James McAndrew Karen T. Slattery Rebecca Adams Anne B. Geremia Richard McDugald Ellen Solomon AFTD Volunteers Allison Giger Al McNulty Jeanette Stoothoff Gail Andersen Gary Parks Griffith McParland Bill Struzzi Keith Atkinson Karl Grow Kathy Mele Jackie Tang Randy Baker Sandi Grow Katherine Mersereau Barry Wank The Bee Family Margie Harrington Virginia Miller David Wetzl Robert Keith Belcher Danny Hedaya Charlene Milne Judy Windhorst Trish Bellwoar Beverly Hernandez David Edward Molod Nance Wolter Stephen Besch Maurice Hinchey Shellie Morcom Laura Yanishefsky A Powerful Way to Remember Your loved one’s legacy can bring hope and courage to others facing FTD. 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 to AFTD.”

Save the Date: AFTD’s 2018 Education Conference

AFTD’s annual Education Conference will be held on April 13, 2018 in Chicago, . Join AFTD staff, persons diagnosed, caregivers and healthcare professionals for a day of learning, sharing and support. Registration opens in January. Be sure to stay tuned to AFTD’s website and social media accounts for more information. 8 The Association for Frontotemporal Degeneration n Volume XIV, Issue 3: Fall 2017 AFTD Holds Second Annual Hope Rising Benefit in NYC n a strong demonstration of hope fullness of human connectivity.” couple VJ and Chuck for a future without FTD, more Anastasia, directed by Joseph Becker I Guests were treated to food inspired tha n 425 of Thinkfilm, Inc. by recipes people f r o m AFTD CEO Susan L-J Dickinson gathered at Cooking announced the creation of the David the Pierre w i t h Geffen Fund at AFTD, which will Hotel i n Adrienne, a provide the organization with $2 New York cookbook million per year over the next ten C it y o n by Joan years. [See page 1 for details.] Geffen October 12 H a r p e r served as a co-chair for the event, for AFTD’s about her joined by s e c o n d f riend sh ip Dr. Henry H o p e w i t h L o u i s R i s i n g A d r i e n n e G a t e s , Benefit. L-R: Discovery Communications president/CEO David Zaslav, AFTD CEO Susan L-J Dickinson, AFTD donor Donald Newhouse, Zausner, Jr., A nna Sen. Charles Sen. Charles Schumer, AFTD Board chair Gail Andersen w ho h a s Wintour S c h u m e r and Donald was honored with the Susan primary progressive Newhouse. Newhouse & Si Newhouse Award aphasia. Jou r n a l i s t of Hope. For decades, he has been Dr. Halima Amjad, Paula Zahn a strong proponent of biomedical assistant professor r e p r i s e d research, fostering bipartisan of medicine at Johns her role as support for these efforts. Hopkins and AFTD’s the event’s “There is no doubt it will take a 2017 Education Journalist and TV host. Tony village to beat FTD and the pain it Conference keynote host Paula Zahn and Grammy hosted the 2017 brings to families,” Sen. Schumer speaker, gave a short Hope Rising Benefit Award winner said. “Our collective work to talk about how her Cynthia Erivo combat this condition through father’s FTD has provided the awareness and advocacy, along guided and informed AFTD CEO Susan L-J Dickinson evening’s inspired musical with federal and private dollars, has her career in geriatrics. performance, including charted a path to winning the fight The night also renditions of “If You Knew over a disease that so callously robs featured the premiere of “VJ and Susie” and “Let It Be,” dedicated to those afflicted of memories and the Chuck,” about the FTD journey of Si and Victoria Newhouse.

David Geffen Fund(Continued from page 1)

“I felt that the only way I could the David Geffen Fund “will greatly “David Geffen’s gift is an incredibly make sense of what [Susan] was increase AFTD’s ability to carry out generous step forward for this going through, what I was going its missions.” He added: “David organization and its mission.” Susan through, was to see what Over the next ten years, the David Geffen Fund will Dickinson said. “Expanding I could do to help other provide $2 million annually to support AFTD’s mission. people suffering from this significantly the scope and horrendous disease,” he reach of AFTD’s work over Geffen is a great friend who reacted said. so thoughtfully to my wife and my the next decade, this fund will In a statement, Donald noted that brother having suffered from PPA.” bring closer a world without FTD.” The Association for Frontotemporal Degeneration n Volume XIV, Issue 3: Fall 2017 9 Giving a Hand to Our Helping Hands! While caring for his wife Janet What you have learned Collins Elligson at home for from your volunteer several years, Charles Elligson experiences so far? of found As a support group facilitator support through a local FTD I have learned greater support group. He found understanding of the unique information and resources way FTD presents in persons through AFTD. Charles says diagnosed. I’ve learned ways that he could not have to tailor FTD information and survived his caregiving years support to fit the many unique FTD situations; and a true without both. Today, as an sense of how facilitation can AFTD volunteer, he channels Charles Elligson with AFTD volunteers and staff contribute to group learning. his personal experience with Through my awareness efforts I have FTD into a role as an AFTD-affiliated discovered that people are interested and want to learn more. support group facilitator, and efforts to raise awareness. What would you say to people who are considering Tell us about your volunteer experiences to date. volunteering with AFTD? I went through the formal training to become an AFTD- AFTD offers volunteers easy access, guidance on how affiliated support group facilitator. I also raise awareness to move forward, and support materials so you can feel about FTD, AFTD and caregiving through speaking confident in your volunteer role. Thanks to the support and engagements and table settings for various organizations guidance provided by Regional Coordinator Volunteers like and professional networks, as well as with my local church Michelle Grant, you know you are not alone. Additionally, community. AFTD offers excellent ongoing training. How has the overall volunteer experience made Anything else you wish to share? you feel? There is hope! A year and a half after Janet’s passing, her It brings deep satisfaction and true joy to know that you are closest friend introduced me to a Presbyterian minister, Rev. using your gifts and skills to bring support group members Jeannette Hickman. We married a year later. together. They bring light, hope, and practical answers to “Charles continues to surprise me with his outreach seemingly unsolvable problems…It is also a great feeling efforts, identifying new opportunities to educate the to be able to educate the community at large about FTD community,” said South Atlantic Regional Coordinator and the impact it has on everyone involved. In a dark world, Volunteer Michelle Grant. “We are grateful for his there’s now light. continued service to support AFTD’s mission.” AFTD Meet & Greets: Reaching Communities Across the Country Meet & Greet events are AFTD’s fastest person or family affected by FTD. a Meet & Greet was a very positive growing community-based volunteer Those attending usually leave with new experience. I found it motivating to see an activity. These informal information and new AFTD-affiliated support group take shape awareness activities bring friends. and start as a result of the gathering.” together people interested Volunteers hosting these in FTD: persons diagnosed, AFTD is committed to not only reaching events have found them to caregivers, family members, our FTD community across the country, friends, and professionals. be both fun and rewarding. but also bringing this community together. Meet & Greets provide Corey Esannason, one of Between July 2016 and June 2017, 15 Meet attendees with the AFTD’s Middle Atlantic & Greets were held across the country. opportunity to 1) connect Regional Coordinators, Since July 1, 2017, there have already been with others, 2) learn said, “It was so wonderful seven scheduled, with many more on the about AFTD programs, to be able to create a space horizon. resources and how to get for everyone to come If you would like to be the catalyst in involved, and 3) share local together. “ bringing your local FTD community information and resources. Deb Nash and Mike Dircksen Zoy Kocian, one of AFTD’s together, please reach out to your Regional For many, Meet & Greets South Central Regional Coordinator Volunteer to learn how you are their first opportunity to meet another Coordinator Volunteers, said, “Hosting can organize a Meet & Greet. 10 The Association for Frontotemporal Degeneration n Volume XIV, Issue 3: Fall 2017

For AFTD’s 2017 Food for Thought campaign, events in 33 states, Canada and the U.K. raised more than $180,000 and counting!

Above Par An Answer for FTD AFTD Board member Steve Bellwoar (PA) hosted the Fourth Molly Trimmer of and her husband hosted a “Quizzo” Annual Colonial Electric Charity Event. Although golf was rained trivia night at their house with friends and family. The 25 guests also out, attendees still enjoyed a spectacular raw bar, open bar service enjoyed food, drinks and goodie bags that contained information on and a presentation of AFTD’s progress. The event, a campaign FTD. All told, they raised $4,645. staple, has raised $108,000 to date. Not Your Average Event Brew for Throughout October, Chuck Anastasia, Doreen Putnam and the Thought Rhode Island FTD Support Group partnered with a local Not Your Average Joe’s; 15 percent of proceeds every Tuesday went to Cathy Sperrick of AFTD. Together, the efforts raised $3,088. New York teamed with Abandon Dairy Productive Brewing Company to offer patrons beer and food at the brewery’s Ryan Windhorst of Illinois partnered with four local Dairy Queen restored 19th century barn, with a beautiful view overlooking locations to donate a portion of one day’s sales. Those unable to visit Keuka Lake. The event raised $9,300. a store were encouraged to donate to his online fundraising page and Room and Board share ice cream with a loved one. Total donations amounted to $2,598. AFTD Board member Bonnie Shepherd of welcomed 54 Cookies for a Cure people into her home. Guests sipped cocktails, while enjoying a Lucy Carter and Meg Warren of offered Christie Cookies light dinner and AFTD-themed desserts. A short presentation for a donation. Each cookie was accompanied by an AFTD bracelet followed. All tied together for a lovely evening that raised $8,752. and brochure. With an online fundraising page, the campaign raised O Food Where Art Thou a combined $1,955. Terry Walter of hosted an evening C omfor t featuring art, wine and cheese. David Wetzl, who is living with FTD, exhibited art for 100 Food guests. AFTD Board Members Beth Walter Katrina Hellman and John Whitmarsh cohosted; the event of Illinois and raised $8,435. the Tremont Caregiver Support Muddy for Tacos Group served up homemade chili and desserts, including a cake that read Deanda Welch of invited family and friends to her house to “Fighting FTD.” Attendees could check out the information enjoy an impressive taco feast – but guests had to travel through table with FTD literature. The event raised $1,880. three days’ worth of rain and mud. The 26 people who attended enjoyed four different kinds of tacos, learned about FTD and raised $5,455. Awareness with Adrienne During the two weeks of the Food for Thought campaign, Joan Harper Five Fighting Courses of the U.K. donated 100 percent of Kathy Ritchie of and The Central Phoenix Advocates for proceeds from her book, Cooking with Dementia Awareness (CADA) hosted their 3rd Annual AFTD Adrienne, to AFTD. She also invited Food for Thought Dinner and Wine Tasting at Beatitudes guests over to indulge in two recipes Campus in Central Phoenix. The five-course dinner, paired with from the book and to learn more about local wine, raised $5,340. FTD. Altogether, she raised $1,854. The Association for Frontotemporal Degeneration n Volume XIV, Issue 3: Fall 2017 11 The AFTD- Team

Thank you to all of our hosts, • Adriana Kipper-Smith • Matt Dineen • Amber and Kristopher Parker • Matthew Robinson who raised additional funds and • Amy Shives • Melonie Conselva • Barb Sidders • Nancy Cummings awareness to support AF TD’s mission: • Brandee Waite • Nicole DeLeve • Christine Groth • Patrick Gutierrez • Diane Cole • Phyllis Mason • Donna Wert • Rachel Castellanos • Elizabeth Soriero • Rachael Light • Esther Harvey • Rebecca Cordova • Gene Thornton • Rebecca Wetzel • Jamie Gordon • Rona Klein • Jan Keller • Jennifer Morabito • Ruth Wilcox • Joanne Linerud • Sarah DeLuca • Karen Smith • Scott Cain • Karine Adalian • Shirley Gordon • Kathryn Caruso • Steph McLain • Katie McLain • Susan Butterfield • Kayla Boehmer • Tam Smith • Kristena Corbett • Tina and Kennedy Ho • Lisa Radin • Terry Pontious • Margaret Haferman • Sandra Leach and • Mary Beth Mixdorf Kimberly Pontious

Thanks to our Food for Thought Liaisons! AFTD’s Grassroots Events Coordinator, Bridget Graham, extends a huge thank you to all 10 of the 2017 FFT Liaisons for their above-and-beyond effort this campaign! • Ariel Harden • Jennifer Morabito • Meghan Roscoe • Sarah DeLuca • Teresa Webb • Elaine Rose • Lark Fiore • Rukhsana Ansari • Susan Butterfield • Traci English

Ohio Golf Outing: The Sidoris family hosted the 12th Golf Party: Suzanne and Calvin King held the 2nd annual George F. Sidoris Memorial Golf Outing on July annual “Tami Sue” Golf Outing & Party on September 9th 22nd. The event raised a record high of $25,200, bringing in memory of their daughter Tami, who passed away from their grand total to more than $178,000 donated to AFTD. FTD. The event raised $3,000. Golf Tournament: Midwest Regional Coordinator Deb Golf Outing: Jon Moretti hosted the 2nd Nash hosted the inaugural Crusade for a Cure Golf Tournament Annual CWM Memorial Golf Outing in memory of his on September 2nd. The event raised $6,786 for research. father, Carl, on July 15th and raised $1,640. On the “House”: Lucy Carter of Tennessee held an event at House Restaurant featuring a musical performance by a caregiver and delicious food donated by Porter Road Butcher. The evening raised $1,000. Hang It to Cure FTD: Sharon and Rod Hall of designed and produced Boston Event: More than 65 members of the FTD a calendar featuring pictures of people diagnosed with FTD. All proceeds go to community gathered at the Ritz-Carlton in Boston on AFTD; thus far they have raised $5,150. September 25 for an evening cocktail reception. AFTD CEO Susan L-J Dickinson welcomed the guests, while Chicago Marathon: Daniel Ranti and Marisa Lutz, both AFTD Scientific Director Nadine Tatton provided a brief from Massachusetts, ran in the Chicago Marathon on behalf update on the latest in FTD research. of AFTD. Combined, they raised over $8,200. Prsrt. Std. U.S. Postage PAID Williamsport, PA Radnor Station Bldg. 2, Suite 320 Permit #33 290 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 Deanna Angello, M.B.A. Kathy Mele Mario Mendez, M.D., Ph.D. David S. Knopman, M.D. Chair, California Ohio New York Chair, University of Mayo Clinic, Rochester Bonnie Shepherd Steve Bellwoar Brian Rose Pennsylvania California, Los Angeles Walter A. Kukull, Ph.D. Vice Chair, Utah Rick Childs New York Ian R.A. Mackenzie, M.D. University of Washington Paul Lester Massachusetts Michael Stowell Chair Elect, University of British Virginia M.-Y. Lee, Ph.D. Treasurer, North Carolina Matt Hatfield Columbia, Vancouver University of Pennsylvania Stephen Fenoglio Florida Beth Walter Carol F. Lippa, M.D. Daniel Hedaya Bradley F. Boeve, M.D. Thomas Jefferson University Recording Secretary, Texas California Mayo Clinic, Rochester New York Irene Litvan, M.D. Helen-Ann Comstock John Whitmarsh, Ph.D. Kacy Kunesh Bradford C. Dickerson, M.D. University of California, San Diego Founder, Pennsylvania Texas California Harvard University M.-Marsel Mesulam, M.D. Dennis W. Dickson, M.D. Northwestern University Staff Mayo Clinic, Jacksonville Bruce L. Miller, M.D. Susan L-J Dickinson, M.S. Bridget Moran-McCabe, M.P.H. University of California, Chief Executive Officer Support Services Manager Karen Duff, Ph.D. San Francisco Sharon S. Denny, M.A. Debra Niehoff, Ph.D. Columbia University Jill Murrell, Ph.D. Program Director Research Manager Bernardino Ghetti, M.D. University Matt Ozga Ben C. Freeman Indiana University Chiadi Onyike, M.D. Development & Communications Manager Communications Director Matthew Sharp, M.S.W. Jill Goldman, M.S. Johns Hopkins University Program Manager Christine Stevens, M.B.A. Columbia University Creighton Phelps, Ph.D. Chief Financial Officer Lauren Gauthier Rosa Rademakers, Ph.D. Online Community Coordinator Murray Grossman, M.D., Ed.D. Nadine Tatton, Ph.D. University of Pennsylvania Mayo Clinic, Jacksonville Scientific Director Bridget Graham Howard Rosen, M.D. Grassroots Events Coordinator Edward Huey, M.D. Kerri Keane, M.S.W. University of California, Matthew Pelton Columbia University San Francisco Volunteer Manager HelpLine Advisor Pam McGonigle, M.A. Harold Perkins III, M.P.H. Michael Hutton, Ph.D. John Q. Trojanowski, M.D., Ph.D. Development Manager Programs and Services Assistant Eli Lilly & Co. UK University of Pennsylvania 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.