Volume XII, Issue 3 Fall 2015 Samuel I. Newhouse Foundation Supports $5.75M AFTD Biomarkers Initiative he Samuel I. Newhouse The issue of accurate diagnosis is not only for advancing FTD research and care: T Foundation has awarded AFTD a huge problem for patients and families, diagnostic and progression biomarkers. a grant of $5.75 million to create it is a huge barrier for researchers and their These biomarkers could then be used the FTD Biomarkers Initiative. The work to develop the first effective drugs in clinical trials to measure efficacy gift, which will be paid over of a drug being tested. five years, was announced by Donald Newhouse, president “Identifying biomarkers of , will foster greater attention Inc., at an October 1 event to FTD by both the academic held at One World Trade research community and the Center to kick off the first pharmaceutical industry,” World FTD Awareness Week. noted David S. Knopman, Where they have been M.D., of the Mayo Clinic identified, biomarkers are in Rochester, , used regularly by medical Donald Newhouse, Stacie Weninger, Joanne Kotz and who chairs AFTD’s Medical professionals for diagnosing patients Donald’s daughter Kathy Mele at the October 1 event. Advisory Council, “and it will and measuring a treatment’s effectiveness. For example, in heart to treat this disease. The new initiative enable researchers to direct specific disease, blood pressure and cholesterol will focus on identifying two types of therapies to the right patients.” have long been used as biomarkers. biomarkers that are of critical importance (Continued on page 8)

Inside This Issue AFTD Rolls Out Support Groups Initiative n every region, support groups play this affiliation process is ongoing for Spotlight On I an increasingly important role for both existing and newly-forming groups. Sue Laden ...... 2 the FTD caregiver community. With Benefits provided to group facilitators the support of its Board of Directors News Briefs...... 2 that affiliate with AFTD are and a generous Hearst Foundations enhancements to the informal supports Education Conference...... 3 grant, AFTD recently began rolling the organization offered previously. out a new initiative that seeks to These will include: membership in Fall Appeal ...... 3 connect support group facilitators to a network specifically dedicated to AFTD, and to connect them with improving care and support for people World Awareness Week...... 4 each other, in new ways. “We are facing FTD; opportunities to attend inviting current and new support group Economic Burden of FTD .....5 ongoing training by FTD experts; a facilitators to affiliate formally with forum for collaboratively developing Donations...... 6-7 AFTD and receive expanded benefits,” best practices in FTD support; and explained AFTD Support Services access to AFTD resources and branded Welcome Debra...... 8 Manager Bridget Moran, M.P.H. materials to promote the group and Volunteers...... 9 To date, 24 group facilitators from groups increase community recognition. in 14 states have agreed and completed The AFTD-Team ...... 10-11 the affiliation process. Moran noted that (Continued on page 4) 2 The Association for Frontotemporal Degeneration n Volume XII, Issue 3: Fall 2015 Spotlight On... Sue Laden, AFTD Board of Directors

y father had Parkinson’s for 27 Sue and her family were AFTD’s first amazing support for people going “M years,” said Sue Laden. “And major donors, and their commitment through this process… and people my mother kept him at home and really to the organization and our community who are recently in need of comfort,” took care of him—while she also had a has grown through the years. She and her she noted. “And at the same time, our life—in an amazing way. When I asked family have set up the Laden Memorial research work is so important because her how she did it, she said: ‘You just put Fund, in memory of her husband. it has the potential to prevent or cure one foot in front of the other and you people who are suffering from FTD.” keep on walking.’” “Hang in…” she noted… “and seek As for her own role in strengthening the out through AFTD a forum where She would offer that advice to any family organization’s work: “I hope I can make now beginning a journey with FTD: you can get support from others.” as much of a contribution to AFTD as “Hang in…” she noted… “and seek out my daughter has…” she said. through AFTD a forum where you can She began serving on AFTD’s Board in Sue brings significant experience in get support from others.” spring 2015, following in the footsteps nonprofit leadership, fundraising, and of her daughter Francine Laden, Sc.D., communications — and serves as publisher Sue lost her husband, the economist whose six-year term with the Board of the Biblical Archaeology Review and Dr. Ben E. Laden — a proud and loving ended in early 2015. husband, father, brother, son and president of the Biblical Archaeology grandfather — to FTD in January 2009. Being part of an organization uniquely Society, a nonprofit, non-denominational “Nobody should have to go through dedicated to care and a cure for FTD is organization dedicated to education what all of us have gone through with part of what drives Sue’s commitment to and dissemination of information about this,” she added. service on our Board. “AFTD provides archaeology in the Bible lands.

Aftd News Briefs

RNA Metabolism in Neurological Thanks To AFTD Regional since 2009. Marise Rowell is now Disease meeting Coordinators taking lead of the support group for The 10th Annual Brain Research Two Regional Coordinators have parents, and Deborah Thelwell is Conference, RNA Metabolism in stepped down after many years of taking the lead of the language group. Neurological Disease, took place service. Ashley Linsmeier was a in Chicago October 15-16, 2015. South Atlantic Region Coordinator, New Support Resource AFTD and Isis Pharmaceuticals were and Katie Brandt was coordinator Caregivers of individuals diagnosed proud to co-sponsor this year’s cutting- for the New England Region. with FTD/ALS now have a new edge symposium, part of the Elsevier AFTD thanks Ashley and Katie for telephone support group. Contact Global Conferences Series. their dedicated contributions to our AFTD Support Services Manager community. Paul Taylor, M.D., Ph.D., of St. Jude Bridget Moran, M.P.H. at bmoran@ Children’s Research Hospital, and Fen- theaftd.org for more information. Biao Gao, Ph.D., of the University of the Support Group Changes Medical School, brought Mary Beth Riedner is stepping down Research Opportunities together basic and clinical researchers to from her role as facilitator of AFTD’s Are you seeking opportunities to share and discuss the latest findings in phone-based language group. She participate in research? AFTD RNA metabolism thought to underlie has been facilitating for the past 1 has added searchable tables to our FTD and other neurological disorders. 1/2 years. Catherine Pace-Savitsky website’s Currently Recruiting Clinical “RNA metabolism is especially complex is stepping down from facilitating Trials and Studies page. Updated in neurons,” noted Dr. Gao. “Our AFTD’s phone-based parent support quarterly, research opportunities are progress in understanding such changes group. Catherine served as AFTD’s organized by targeted condition, as has set the stage for the development of second Executive Director, and has well as the country and region where RNA-based therapeutics.” served as a support group facilitator each opportunity is located. The Association for Frontotemporal Degeneration n Volume XII, Issue 3: Fall 2015 3 BECOME A MONTHLY DONOR: Help Caregivers and Families Take a Much-Needed Break

Then, in August, AFTD’s Comstock “Having these amazing times together Respite and Travel Program, which helps us all to care for Parks,” added provides up to $500 to people and Griffith. families impacted by FTD, so that they can take some time to A modest grant has had a huge renew their energy, opened up new impact for the entire Griffith family. possibilities. Griffith was finally Won’t you help us make an impact able to take her 8-year-old son and on the lives of even more caregivers 10-year-old daughter on a “dream and families? trip” to the Magic Kingdom. Recurring donations allow AFTD to “Watching a parent decline like stimulate research and fund services The Griffith family: Kathleen, Parks, and this takes an emotional toll. They for those affected by FTD, such as their two children. Photo by Kathleen’s still need to be kids, to have a kid’s our Comstock Respite and Travel brother, Stephen Dey. life,” Kathleen said. “For us to Program. Become a monthly donor be able to go to Disney World … today and help establish a sustained athleen Griffith had long talked K The question of ‘Where’s Daddy?’ source of income for AFTD. about taking her children to Disney Everyone could turn that off. World, but with her husband Parks They could be kids.” The magical Use the enclosed envelope, or visit Griffith facing FTD and Kathleen his getaway lasted just four days, but it www.theaftd.org/get-involved/ways- primary caregiver, it just wasn’t an option. had a lasting effect. to-give/monthly-giving. Save the Date: 2016 AFTD Education Conference lanning is now underway for Alvin C. Holm, M.D. of Bethesda Registration for the Education P the 2016 AFTD Education Hospital/HealthEast Care System. Conference will open in January Conference – please save the date! 2016. Currently, AFTD has The Conference will be corporate and individual held in Minneapolis on conference sponsorship May 13th, 2016 at the opportunities available. For DoubleTree by Hilton more information about Hotel Minneapolis- sponsorship opportunities, Park Place. The please contact AFTD keynote speaker, Development Manager accomplished Pam McGonigle at children’s author [email protected]. and illustrator Nancy Carlson, will AFTD offers modest share her personal financial assistance journey with FTD for individuals with as a caregiver to her FTD and caregivers husband, Barry. interested in AFTD’s annual Education Conference attending an FTD education Other confirmed speakers include provides opportunities for all members conference. Comstock Travel Bradley F. Boeve, M.D. and of the FTD community – researchers, Grants may be used to defray David S. Knopman, M.D., both of medical professionals, caregivers and the cost of travel, lodging, and Mayo Clinic Rochester, Darby J persons living with FTD – to meet conference fees in order to attend. Morhardt, Ph.D., of Northwestern’s in person and share resources, while For more information, see: Cognitive Neurology and becoming updated on the latest www.theaftd.org/life-with-ftd/ Alzheimer’s Disease Center and developments in FTD care and cure. resources/travel-grants. 4 The Association for Frontotemporal Degeneration n Volume XII, Issue 3: Fall 2015 Ten Countries Make their Voices Heard During First

Italy

Australia Argentina France

The Netherlands

Constituents around the world hold signs explaining their Spain reasons for taking part in World FTD Awareness Week.

rom conferences in Australia The week launched with a special this disease, it’s a time of growing Fand The Netherlands, to a event at One World Trade Center hope,” said Dickinson. concert and an art gallery event in that saw more than 200 attendees. Spain to a citywide proclamation Participants viewed a short film Special FTD Awareness in Canada, constituents around the adapted by Joe Becker from his advertisements were created by AFTD world made their voices heard in feature It Is What It Is… and heard volunteer Jody Zorn (see page 9). the fight against FTD during the from speakers who shared their With support from a generous donor, first-ever World FTD Awareness families’ stories, including AFTD these were placed as full-page ads Week, October 4-11, 2015. Board Chair Jary Larsen, Ph.D. and in two Sunday editions of the New AFTD volunteer Nicole Savini, a York Times, and are now appearing in In 2013 and 2014, AFTD convened television producer. monthly publications, most recently national FTD Awareness Weeks the 11/23 issue of . in the United States, anchored by Over the week that followed, 20 In Australia, constituents hosted its Food for Thought grassroots international events and 61 Food for an inaugural Asia Pacific FTD/ campaign. In the days leading up to Thought events hosted by supporters MND Scientific meeting. France’s the inaugural World FTD Awareness in the United States worked to raise first FTD Day was co-hosted by the Week, AFTD Executive Director FTD awareness with activities, events, French National Reference Center for Susan Dickinson M.S.CGC summed conferences and online social media Rare Dementias and the nonprofit up the motivation for this growing campaigns. “With communities France-DFT. (Visit www.theaftd.org/ international effort by saying, coming together from around the newsroom/world-ftd-awareness-week “Everything we need to accomplish globe to spread awareness and to raise for a list of events that were open to begins with awareness.” the funds for the crucial work to fight the public.)

Support Groups Initiative (Continued from page 1) Rona Klein, who runs a support group in Winston- will be updated as more are identified and when Salem, NC., recently committed to affiliation. She groups’ facilitators complete the affiliation process. explained, “AFTD offers the support I need, to provide “AFTD’s mission and goals have always included correct, specific information to what people are dealing offering assistance to FTD support groups,” added with in FTD. Without these resources, my group would Moran. “Increasing the number of strong, effective only be able to use broad, dementia-related information.” FTD-focused support groups is one of the best ways AFTD has revised the online listing of Support AFTD can help people to manage symptoms and Groups on its website’s regional pages. (See www. preserve some quality of life,” she said. “Through theaftd.org/get-involved/regions). These listings this initiative, we will have the opportunity to ensure now enable visitors to easily find support group that all those living with FTD and their caregivers information for each state, and to see if the group have access to high quality and FTD-specific support leaders have affiliated with AFTD. The listings systems and services.” The Association for Frontotemporal Degeneration n Volume XII, Issue 3: Fall 2015 5 Preparations Underway for FTD Economic Burden Study B or AFTD Board Member Individuals with FTD may also of Medicine at Atlantic F and Recording Secretary Gail spend money on risky investments, University, the study will ask family Andersen, her husband’s compulsive shopping sprees or email/phone members and caregivers of FTD spending was “a good example of scams. As bills mount and resources patients to complete a questionnaire how people with FTD can have a lot of are depleted, families are forced to detailing their experience with cognitive capability, but no judgment.” give up homes, college educations the diagnosis and management of While Andersen was at work, her or plans for retirement. “So many FTD, interactions with healthcare husband was online, buying things families are completely wiped out,” providers, resource availability and the family didn’t need and running says Andersen. utilization, health-related quality up extravagant credit card bills. “So I of life, and the challenges they have took the credit cards away,” Andersen “These findings will help to shape faced. The results will be stratified by explains, “and then discovered he’d health policy, drive research FTD subtype, allowing Dr. Galvin’s memorized the numbers.” research team to determine if the agendas, promote allocation costs associated with each differ. In Families caring for an individual of appropriate financial and addition, the team will compare the with FTD identify that this disorder community resources and economic burden of FTD to that of exacts a heavy financial toll, both provide much needed support to Alzheimer’s disease. before and after diagnosis. Medical expenses - for visits to multiple patients and families currently The study will represent doctors, including specialists in distant living with FTD.” an important advance in our cities; for a seemingly endless array understanding of the far-reaching of diagnostic tests; for misprescribed Previous research on the economic consequences of FTD for families, medications; for genetic screening; burden of neurodegenerative disorders the healthcare system and society at and for home health and long-term has largely focused on Alzheimer’s. large. In addition, it is expected to care - contribute significantly to “FTD may be even more costly than provide much-needed quantitative financial hardship. Alzheimer’s disease because of the lost data to support and expand advocacy contribution of two salaries and the efforts, inform policymakers and However, the economic burden of added cost of caring for a young-onset increase research funding to develop FTD extends far beyond the cost of patient,” notes Murray Grossman, effective treatments. “We anticipate diagnosis and treatment. Symptoms Director of the FTD Center at the that the results of this study will have often begin when patients are in their University of . Edward a profound impact on our ability to prime earning years and have children Huey, Assistant Professor of Psychiatry advocate for services and resources living at home or in college who still and Neurology at Columbia University that our patients and their families depend on them financially. When College of Physicians and Surgeons both need and deserve,” notes AFTD symptoms worsen to the point that the observes that when patients lose jobs, Executive Director Susan Dickinson. individual with FTD can no longer they also lose insurance coverage and work or is fired, the subsequent drop in adds, “As a result of their young age Dr. Galvin adds: “These findings income can pose dire and immediate and behavioral symptoms, patients will help to shape health policy, challenges to the family’s finances. with FTD often have to be placed in drive research agendas, promote more expensive facilities with more allocation of appropriate financial and If outside care is unavailable or supervision.” community resources and provide unaffordable, spouses or partners much needed support to patients and often have little choice but to give However, an important new families currently living with FTD.” up careers and become caregivers, research effort will focus specifically resulting in additional loss of income. for the first time on the financial, Your participation will be vital At the same time, new expenses, such social, and psychological hardships to the success of this important as care for children who can no longer associated with FTD. Sponsored research project. Please watch the to be entrusted to the affected parent by AFTD and headed by Dr. James AFTD website for more information or legal fees necessitated by behavioral Galvin, Professor and Associate on the launch of this survey, as indiscretions, place additional strains Dean for Clinical Research at well as directions for accessing and on the family budget. the Charles E. Schmidt College completing the survey. 6 The Association for Frontotemporal Degeneration n Volume XII, Issue 3: Fall 2015 Donations Honor Loved Ones Gifts received from June 16 - October 15, 2015 In Memory Of Lewis Grant Robert Miller Stanley Wallack Patricia Gray Carol Morris Kathleen M. Wallenfang James S. Abbott Carol Diane Greene Raymond Charles Murray Michael G. Wallis Harold Abramson Marsha Corns Greenlee Michael J. Murray Jane V. Ward Bruce Jeffrey Adler Albert Charles Hall Judy Grummon Nelson Dwight H. Warrington Sr. Laura Ahlbeck Richard Hanechak Alice Neuman Susan Watson William “Bill” M. Allen James J. Hansen Susan Newhouse Judith May Weiler Christine Andrey Donna C. Harold Marie Annette Nichols Rosemary “Cookie” Weiten Anna Held Audette Kathleen “Kate” O’Brien Hartig Joseph Palmisano Lewis Weston Emerson R. Avery Evelyn A. Hayes Camilla Perry William “Bill” White Norma Benson Harold Hedaya Debbie Pike James E. Wilcox David Berkowitz Richard Lloyd Heilman Albert Anthony Pondelli Marjorie Ann Gately Wild Raylene Jean Biren John D. Heizman Thomas Potter on his birthday Tim Williams Sandra Bishop Bernard Heitz Camilla Perry Carole Mary Zalenski Lynn Bloch Robert L. Hermann Bette Phillips Nancy Bloom Beverly Hill Joseph Wayne Plageman John “Jay” D. Blossom III Nan Hochstein Neil Radin In Honor Of James “Jim” William Bope Richard “Dick” Huddlestone Bob Rednick Lydia Adalian Lonnie Bradshaw Pamela Hughes Jimmie Wayne Reed Randy Baker Nancy Bresky Jan Hupfauer Scott Hayward Reed John Baumgartner Edward Marks Butler Robert E. Johnson Lorraine Reboul Steve Bellwoar and Family William J. Butterworth III Karen Stevens Jones Faye Reeder Trish Bellwoar Richard B. Carpenter Bobbie Kallemeyn Jessie Reid David Birnbaum Willis H. Caterson Jan Karwowski Barry Rein Joy Spartin Bowen Arthur Cavara Lauri Gail Berman Katz Steve Riedner Vicki L. Branecki Peter Chase James C. Kearney Carol Ann Rockett Ronald Campbell Robert N. Chiperfield Scott A. Kibort Carol Rosey John Carlson Anna Mary Christiana Eugene Klein Rosellen Roy Donald Carnig’s birthday Sophie Chrobak Steve Koppa Tom Ruhlman Frank Carpentieri Linda Arlene Clark Otto Kostka Leroy Melvin Ruttinger Su-Ling Chang Lawrence T. Cline John M. Kretekos Evelyn B. Sambur Charles Cole Daniel Channing Cole James E. Krouse Ronald Schlie Helen-Ann Comstock Edward “Bruce” Coon Rose Kuchera John “Jack” Schloerb Annie Dalton John J. Cox Robert J. LaMarre Rick Schmid Scott Dalton Linda L. Csanadi Peter J. Larsen Avon Howard Schulthies Charles Derrow Ernest L. Davis Arnette Lester Richard L. Scott David Dosser Wilfred Denise Howard Levy Matthew Sevcik Twila Eisley Eleanor Dondiego Deborah “Debi” Elizabeth Lewis Shirley Shaw Harald W. Feige Wadley Hugh Duckworth Jacqueline Farr Lloyd Ned James Shepherd Shelley D. Fischel Pamela Duncan Adelaide Miller Ludy George F. Sidoris Diane Fitzgerald Ronald Duncan Jordan “Tam” Tamar Macy Judith Skubis Courtney Gasque & Janet Dunne Phyllis Malloy John D. Sousa Matthew Politano marriage Michael James Dziatkowicz Tom MacKnight Judy Stitt Olin Gentry Frank Englekraut III Donald B. Marcum Ruth Strauss Helen Granzeier Jerry Feldscher Susan Marcus Robert J. Sykes Jr. Gary P. Griffith Michael E. Fenoglio Sarah Mast Janet DeBruyn Thomas Alice Hale Andrew Fitze Gary Matusch Howard Thorn G. Simon Harak Angela Flood Robert Matusiak Lois Ann Thornton Margie Harrington Mary Fox Edward McAndrew Shirley Marie Tinker Julie Jackson Mary Ann Fredheim Ronald McCarthy Stephen M. Tipton Debbie Johnson Bernard Fridovich Terry McDevitt Charlotte Turner Douglas Johnson Donna Rae Garrett Judith Lorraine Janet L. Valley Debby Kallaher Victoria Glandon Gailhard McDonald Richard Van Dyke James C. Kehoe Raymond Salvatore Gomez Thomas McMahon Judy van Roekel Rita Khoury Patrick Grady Larry B. Meares Jeff Van Son Faye Olivieri Kozich David Gragg Madeline Miele Maureen B. Vazquez Donna Kunesh Jane Grant Barbara Mikolajczyk Beverly Waite Kacy Kunesh The Association for Frontotemporal Degeneration n Volume XII, Issue 3: Fall 2015 7 AFTD is grateful for these gifts, which fund research, education and support. Erin Lester & Charlotte Murray John Radosta Jeanette Stoothoff Brent Coffey marriage Louis Nieto Hector Roach Bill Struzzi Dale W. Lutz Andrew Nissen Donna Rose Judith L. Temple Lily Matusiak & Larry Olivieri Karen Rowe Barbara Tinsley Paul Scanlon’s wedding Rhoda M. Oswald Lori Ruhlman Robert Traurig Bunny McMurrer Stewart Peterson Kirk Ryder Barry Wank Trenton McNally Mary Catherine Pfeifer Joyce Shenian Dennis White Clare McNamara Joshua Pierce Sharon V. Snyder Elaine White Virginia Miller Janis Pitts Ellen Solomon John D. Wilson Cynthia Mongelli Isaac Rabino John Stackhouse Judy Windhorst Shellie Morcom Linda Rabino Richard St. Jean William Zorka

In lieu of flowers… Families who wish to direct memorial donations to AFTD are encouraged to call our office. 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 Now.”

NAPA Adds Expert on Related Dementias to Advisory Council

FTD is pleased to report challenges and issues related to reminded the Council that developing A that Lewy Body Dementia the non-Alzheimer’s dementias biomarkers for diagnosis and disease Association Director of Programs and that the National Alzheimer’s progression in FTD was a key Angela Taylor has Project will continue recommendation to come out of the been appointed to fill to benefit all those 2013 Alzheimer’s Disease-Related a vacated seat on the affected by these diseases. Dementias Research Summit. He National Alzheimer’s shared AFTD’s recent announcement of Project Act (NAPA) The appointment an FTD Biomarkers Initiative (see page Advisory Council. follows early 2015 NAPA 1), and noted: “Success in developing NAPA formally included meetings, during which biomarkers for FTD will inform similar FTD and other related both Sharp and Taylor initiatives for Alzheimer’s and all of dementias in its priorities requested changes to the related neurodegenerative in 2014; however, until the composition of the disorders.” now, there were no Advisory Council, with The composition of NAPA’s representatives with Sharp advocating to Advisory Council is particularly exclusive expertise in a add a seat specifically important as preparations begin for non-Alzheimer’s dementia. Angela Taylor for the related dementias. “This appointment the 2nd Alzheimer’s Disease-Related “With this appointment, the signifies critical progress,” he noted. Dementias (ADRD) Research Advisory Council is making a “But we hope that The Council Summit, scheduled to take place at significant step toward including the and the Department of Health NIH in March 2016. In accordance with perspective of the related dementias,” and Human Services will continue The National Plan to Address Alzheimer’s said Matthew Sharp, M.S.S., AFTD to give serious consideration to Disease, NINDS is convening the Program Manager. “In this area, the establishing a dedicated seat for the Summit to review progress on research Council has appointed a dedicated, related dementias, to ensure that all recommendations developed at the knowledgeable and articulate relevant perspectives are brought to first (2013) ADRD Summit for FTD, advocate.” Adding Ms. Taylor’s bear on the task at hand.” Lewy Body and vascular dementias, perspective and expertise will and to update priorities and timelines be one key step to ensure that During the most recent NAPA to advance research targeting these the National Plan includes the meeting, on October 26th, Sharp non-Alzheimer’s dementias. 8 The Association for Frontotemporal Degeneration n Volume XII, Issue 3: Fall 2015 AFTD Welcomes Research Manager, Debra Niehoff FTD is and served as the coordinator of the will administer and develop Apleased College’s neuroscience program, one AFTD’s grants programs, oversee to welcome of the first in the country at the two- planning for the FTD Treatment new s t a f f year college level. Her experience Study Group, support the FTD m e m b e r also includes scientific and medical Biomarkers Initiative, and assist D e b r a writing - she is the author of two AFTD’s Scientific Director in a N i e h o f f , popular science books, and ran her range of other research efforts. who holds own biomedical communications a Ph.D. company - as well as eight years of “The opportunity to be part from The service on the Board of a drug and of an organization committed Johns Hopkins University School alcohol treatment facility in Bucks to supporting research on this - of Medicine. She joined AFTD County, PA. These efforts have level and improving public in October as Research Manager, provided a base of interpersonal, understanding of FTD through - working under the guidance of organization, and communication education and advocacy is both Scientific Director Nadine Tatton, Ph.D. skills that will benefit AFTD’s professionally and personally mission. fulfilling to me,” she noted. “The A neuroscientist by training, Debra passion AFTD staff bring to served most recently as an instructor “I am excited to join the team improving the lives of those with at Bucks County Community and eager to contribute to AFTD’s FTD and their caregivers is truly College, where she taught psychology research,” said Niehoff, who compelling.”

Biomarkers Initiatives (Continued from page 1)

“I had never heard of this rare disease before my beautiful Stacie Weninger, Ph.D., Executive Director for the F-Prime wife, Suzy, was diagnosed in 2005,” said Newhouse at Biomedical Research Initiative, will chair the Scientific the beginning of his remarks. He went on to share that Advisory Board (see sidebar) that will guide this multi- his brother, Si, is also diagnosed with FTD: “In a tragic year effort. In late 2015, the Board will meet to review the twist to our family’s journey, we face a second case of current state of knowledge regarding FTD biomarkers and FTD without any genetic link between the two. And craft the first Request for Applications, to be issued early so this disease that can steal such crucial things from a in 2016. AFTD anticipates awarding half of the available human being does not feel rare to my family.” funds in 2016 and issuing a second, equivalent round of funding two years later, depending upon “We went looking for ways to combat “We each have something we this disease,” Newhouse continued. the number and quality of applications. can give to make a difference.” “We met a number of gifted clinicians In closing this announcement, who provided the best care possible, Newhouse issued a call to action: but… the best we have today is still not very good. And “Everyone has something unique and valuable to offer, and so we searched for a way to change that and were directed I urge each of you to join AFTD and engage yourself to to AFTD.” whatever your passion directs you. Whether this be a gift Both Newhouse and Dickinson called for international to provide current caregivers with respite, a donation to collaboration, as well as cooperation across industry, fund a young scientist at the start of his or her career, the academia and medicine. “We will convene experts from volunteering of your expertise or the running of a support around the world to help us award funds to the best group so families can connect and feel less lonely. We each ideas and the best science wherever they find them,” have something we can give to make a difference.” said Newhouse. “And we will welcome partners from the pharmaceutical and biotech industries, from NIH, from AFTD is grateful for this Samuel I. Newhouse Foundation the FDA and from other organizations who want to join gift, and optimistic for the transformative gains that our in the cause.” community will make as a result of it. The Association for Frontotemporal Degeneration n Volume XII, Issue 3: Fall 2015 9

By Kathy Urban, Giving a Hand to Our Helping Hands! AFTD Volunteer ody Zorn has been a volunteer with New Yorker. She also created a logo for Communications Director at the J AFTD for just about eight months, World FTD Awareness Week that was AFTD, has had the opportunity to work but her impact has been incredible so adopted by the international community with this AFTD volunteer on several far! She brings vital (see page 4). projects. Of her work on the awareness experience and advertisements, he commented: “Jody talent as an Associate Jody shared, had a very clear vision of what she Creative Director “I got involved with could achieve with the designs, and at an ad agency in the organization then worked with us to make sure we City. In because my father were able to get what AFTD needed fact, she played two passed away from the from the project. That mix of having key roles in making disease last December. a particular skill and knowing how the f i r st World I had never heard of to use it in collaboration made for an F T D Aw a rene s s FTD before he was excellent process from start to finish, Week a success! diagnosed and knew and the results clearly resonated for our it wasn’t a well-known community and others who didn’t know Jody designed disease. I wanted about FTD prior to seeing the ads.” two full-page ads to help change that which appeared in any way I could. Those connected with FTD have in two Sunday editions Jody dances with her father I figured my time and most likely faced the challenges of at her wedding. of The New York Times, expertise in advertising explaining it to others. Through Jody’s and formed the basis of a special would be worth more than any creative and extraordinary work, she is www.theaftd.org/learnmore website money I could ever give.” helping to foster awareness of the disease page. Those ads are now running in among a growing audience. Look for monthly publications, most recently The Ben Freeman, Development & future efforts by this talented volunteer. Food for Thought Volunteer Liaisons: Key to a Successful Campaign FTD’s Food for Thought campaign Hopper and Margie Simon, returning to A(FFT) reaches such a wide audience this role for a second year. – and plays such a significant role in the Host Jennifer Morabito commented, “I was 2015 Food for organization’s grassroots fundraising -- contacted by [FFT liaison] Deanna Rice as I Thought Liaisons thanks to the many event hosts was planning my FFT event, who participate across the and she was so helpful and country. To manage a growing Tina Ho supportive that I really feel number of events, AFTD relies like I have been included in an Erin Hopper on FFT volunteer liaisons to amazing group. Thank you!” take the lead in supporting hosts. The liaison is the host’s “AFTD is lucky to have such Charlene Martin-Lillie primary AFTD contact, and a caring and committed group of Minnesota their go-to person to address individuals. The FFT campaign questions throughout the Deanna Rice was so successful again this year Virginia planning process. The liaison’s goal is to because of their assistance and responsiveness. make the host’s experience a positive one, Meghan Roscoe It was very much a team effort,” said Kerri in which they feel connected to AFTD and Barthel, AFTD volunteer manager. supported as a member of the AFTD-Team. Elaine Rose For the third year in a row, the campaign AFTD is truly grateful for the time and had a fantastic group of dedicated effort put forth by the liaisons over the past Margie Simon volunteer liaisons. They all attended a five months. They represented AFTD well and training to prepare and brought enthusiasm provided guidance to those raising funds and Cathy Sperrick and professionalism to the position. This FTD awareness with compassion and patience. New York year’s team consisted of eight volunteer AFTD looks forward to recruiting and working liaisons, with three, Meghan Roscoe, Erin with volunteer liaisons again next year. 10 The Association for Frontotemporal Degeneration n Volume XII, Issue 3: Fall 2015 The AFTD- Team AFTD-Team Hosts Food for Thought During World FTD Awareness Week The first-ever World FTD Awareness Week (see story on page 4) featured strong participation from community members in the United States, through the third annual Food for Thought campaign. AFTD volunteers hosted 61 Food for Thought events in 32 states and , D.C., as people in nine countries joined forces to host 20 additional awareness events!

Oregon Northwest Regional Coordinator Amy Diane Cole and her daughter Eissler paused for a break following Lisa Weber welcomed patrons of the Cause and Event Race. Amy raised Fire and Ice Pizzeria & Creamery FTD awareness among race volunteers in St. Joseph, Michigan during and members of the FTD team, as well as other racers who wished to learn more. World FTD Awareness Week.

California: Pot Luck for Returning FFT Host Long-time AFTD grassroots event host Brandee Waite gathered a group of friends and family known as Team Bev in Sacramento, CA for a 5K/10K relay run, followed by a combination pot-luck and catered brunch.

Maryland: Cindy’s Cakes : Dine-in Movies A team of bakers backed Jennifer Food for Thought host Shana Nissen selected Morabito and her Food for Thought San Antonio’s Alamo Draft House as the site effort. Event organizers accepted of her event, which capitalized on the trend of pre-orders for mini-cakes, named in dine-in movies. Participants enjoyed dinner memory of Jennifer’s mother, each and were shown two FTD documentaries. costing $3, which were distributed Pictured here are Shana’s husband Andy’s in Central Maryland. The event mother, and their friend Annalisa. Proceeds raised $1,013. from ticket sales benefited AFTD, and the event raised $1,400.

Arizona: Rummage & Bake sale Cheryl Johnson hosted an all-day Rummage & Bake sale in Phoenix Arizona. The event brought together artists, food, and wares of all types, while offering FTD information and fostering awareness, including sharing a “Faces of FTD’ display. The event has raised $1,835.

Who Do You Love? AFTD invites you to take part in a special social-media campaign that will launch this winter. Help us to share a new video with the world, to raise awareness and raise funds for AFTD! Help us tell the FTD story to a wider audience! E-mail AFTD Grassroots Events Coordinator Bridget Graham at [email protected] to learn more. The Association for Frontotemporal Degeneration n Volume XII, Issue 3: Fall 2015 11 The AFTD- Team Every Bite Helps Food for Brian and Sharon Rose hosted “A Bite to Fight FTD” in honor Thought of Brian’s mother, Donna Rose. Participants video-recorded themselves getting ready to enjoy a favorite sandwich, accompanied Arizona by an FTD awareness message. The event raised $8,675. In Phoenix, attendees enjoyed a five- course dinner as host Kathy Ritchie teamed up with CenPho Advocates for Dementia Awareness. The event raised more than $3,500. Delivers Awareness with Baked Goods Restaurants Oklahoma FFT host Heather Miller used her talent for baking to Join the Team promote FTD awareness and raise funds.

In Madison and Milwaukee, four restaurants hosted donation Cupcakes Ed Fitzgerald’s grandkids made and sold boxes and distributed educational materials. Tip Top Tavern for electronic cupcakes, then baked real ones for (managing partner Alfred B. Rasho pictured with organizer a party with Grandma at their home. The Grandma event raised $235. Hillarie Higgins) also donated sales proceeds. The Food for Thought event raised over $700. On Board AFTD Board members raised more than $90,000 for Food for Thought! Steve Bellwoar’s event brought in more than $82,000; Hits the Rink Bonnie Shepherd’s raised more than $5,500, and Gail Andersen’s for FTD event raised $2,180. Kerri Unger invited her McCook, Nebraska community to travel back in time and join New Tournament in a roller-skating party with vintage skates in an old barn. The Food for Thought event The inaugural John Baumgartner raised $340. FTD Golf Tournament was held October 12th in Alabama. Hosted by an individual recently diagnosed with FTD, John Baumgartner, and Connecticut Bake Sale his family and friends, the event Arden Courts in Connecticut hosted a brief presentation by raised over $13,000. Megan Roscoe of the Connecticut FTD Foundation, and showed a DVD about families dealing with FTD. Arden Courts staff provided a bake sale, with proceeds of $230 Longest Running benefiting AFTD. AFTD’s longest running grassroots fundraiser, the 10th Annual George F. Sidoris Memorial Golf Outing was held August 15 at A.C. Marathon Lost Nation Golf Course in Willoughby, OH, raising $21,300. Russell Zomback completed the Atlantic City Marathon on October 18th in memory of his father, and raised $4,730. Flying New York Targets Young-Onset Dementia Colors New York’s Abandon Brewing Company hosted an October 3rd event. Guests enjoyed food with beer pairings and live music. The With his friends, Danny Hedaya participated in the July 26th Food for Thought event raised over $10,000. Color Me Rad 5K NYC MetLife race, raising more than $23,000 for FTD research in memory of Danny’s father, Harold Hedaya. Teacher Inspires Students Run, Rock and Roll In Louisiana, Nancy Buckman’s students motivated her to host Kenda Greenwood completed in the Rock ‘n’ Roll Marathon an FFT event. She posted daily photos in memory of her sister during the second week of October to promote awareness, and Linda, with a recipe and information about FTD. raised $1,065 to support AFTD’s mission. 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

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AFTD www.theaftd.org phone: 267.514.7221 toll-free phone: 866.507.7222 Board of Directors Medical Advisory Council Jary Larsen, Ph.D. Deanna Angello, M.B.A. Emily Levy, M.B.A. Chair, California Massachusetts David S. Knopman, M.D. Virginia M.-Y. Lee, Ph.D. Chair Debbie Fenoglio Steve Bellwoar Kathy Mele , Mayo Clinic, Rochester University of Pennsylvania Vice Chair, Pennsylvania New York Mario Mendez, M.D., Ph.D. Carol F. Lippa, M.D. Bryan Dalesandro Earl Comstock, Esq. Lisa Radin Chair Elect, University of Drexel University Treasurer, Pennsylvania Washington, D.C. California, Los Angeles Irene Litvan, M.D. Stephen Fenoglio Popkin Shenian Bradley F. Boeve, M.D. University of California, San Diego Gail Andersen Pennsylvania Recording Secretary Texas Mayo Clinic, Rochester Ian R.A. Mackenzie, M.D. , Susan Laden Bonnie Shepherd Bradford C. Dickerson, M.D. University of British Columbia, Washington D.C. Harvard University Vancouver Helen-Ann Comstock Paul Lester John Whitmarsh, Ph.D. Dennis W. Dickson, M.D. Founder, Pennsylvania California M.-Marsel Mesulam, M.D. Mayo Clinic, Jacksonville Northwestern University Karen Duff, Ph.D. Bruce L. Miller, M.D. Staff Columbia University University of California, Susan L-J Dickinson, M.S. Bridget Moran, M.P.H. San Francisco Executive Director Support Services Manager Bernardino Ghetti, M.D. University Jill Murrell, Ph.D. Sharon S. Denny, M.A. Pam McGonigle, M.A. Indiana University Program Director Jill Goldman, M.S. Development Manager Columbia University Chiadi Onyike, M.D. Ben C. Freeman Debra Niehoff, Ph.D. Murray Grossman, M.D., Ed.D. Johns Hopkins University Development & Research Manager Communications Director University of Pennsylvania Rosa Rademakers, Ph.D. Matthew Sharp, M.S.W. Edward Huey, M.D. Mayo Clinic, Jacksonville Nadine Tatton, Ph.D. Program Manager Columbia University Scientific Director Howard Rosen, M.D. Bridget Graham Michael Hutton, Ph.D. University of California, Kerri Barthel, M.S.W. Eli Lilly & Co. UK San Francisco Volunteer Manager Grassroots Events Coordinator Walter A. Kukull, Ph.D. John Q. Trojanowski, M.D., Ph.D. Jamie Barnaba Michelle Leahy University of Washington University of Pennsylvania Business Manager Development & Business Assistant For permission to reprint articles, please contact [email protected] or call 267-514-7221. AFTD is a non-profit, 501(c)(3), charitable organization. A copy of AFTD’s official registration and financial information may be obtained from the PA Department of State by calling toll free within Pennsylvania, 1-800-732-0999. Registration does not imply endorsement.