Volume VIII, Issue 1 Spring 2011 AFTD Adopts New Name, Renews Mission esponding to feedback from pa- varied constituent groups that AFTD the word “dementia” when diagnos- tients, families, and many medi- serves: patients, caregivers, researchers ing a person with an FTD language or R cal experts, AFTD has changed and clinicians. Work led by an ad hoc movement disorder. In the literature, its name to The Association for Fron- committee of AFTD’s Board of Di- researchers use a variety of terms to re- totemporal Degeneration. The change rectors also included an extensive lit- fer to the broad group of diseases: some was adopted in recognition of a recent erature search and engaged discussions use “frontotemporal dementias” some shift in medical terminology, as well as use FTLD, or frontotemporal lobar a strong desire that AFTD be a place With a new name, degeneration (which is a broad term where patients and caregivers living comes a new web address. for the underlying disease pathology) with the wide variety of diagnoses the and at least one journal has already organization supports will feel welcome. Visit us at used “frontotemporal degeneration.” “The AFTD Board of Directors unani- www.theaftd.org. “All of our experts agree that this mously supported this decision,” says array of clinical disorders include dif- AFTD Board Chair Beth Walter. “We with the organization’s Medical Advi- ferent types of abnormal protein ag- have so much important work to do, sory Council and peer organizations. gregation in the frontal and/or temporal we invite everyone affected by any of While results were not unanimous, lobes of the brain,” says Emily Levy, these diseases to join us to spread aware- some facts did emerge. A significant ad hoc committee chair. “So it became ness, create support services and fund portion of families do not identify clear that we needed a comprehen- the research that will produce a cure.” with the term “dementia” and some sive term that includes all of the clini- The decision came after a lengthy are offended by it. Many of the clini- cal subtypes and all of the pathologies.” process that included surveying the cians indicated that they do not use (See New Name, page 4) Inside This Issue Current Advances in FTD Research Spotlight On A Medical Advisory Council Update from Bradley Boeve, M.D. Emily Levy...... 2 nterest and activity in FTD continues to build, and News Briefs...... 2 brings with it the hope that within the coming decade Biomarker Grants...... 3 I we will witness the first disease-modifying therapies. Annual Meeting...... 3 The following summary is a brief update on several Potamkin Prize...... 5 current advances within the FTD research community: Donations...... 6-7 Strategic Research Analysis AFTD and the Alzheimer’s Drug Discovery Foundation Matching Gifts ...... 6 (ADDF) commissioned a comprehensive review of Danis Challenge...... 7 funding from 1998 – 2008 for FTD-related issues. Online Survey...... 8 The intent of the analysis is to review research funding internationally, explore the pattern of research spending, On Coping ...... 9 and to determine where gaps and opportunities Bradley Boeve, M.D. Awareness...... 10 exist. A summary of the report will be published this Chair, AFTD Medical Tell 10 People Events...... 11 (See Research Advances, page 4) Advisory Council 2 The Association for Frontotemporal Degeneration n Volume VIII, Issue 1: Spring 2011 Spotlight On...Emily Levy, AFTD Board of Directors

hen Emily Levy But when Team Legal questions? She found a lawyer. W finds herself at Alice set out to As the support group continued, Levy a dead end her solution learn more about developed a relationship with AFTD. In is simple: build a new FTD support in 2010, she joined the Board, and Research road. As a consultant Boston, they didn’t and Awareness Committees. “I thought, in the biomedical field, just hit a dead end: wow, I’ve just found what I didn’t even Levy is used to finding “It just felt like we know I was looking for,” Levy says. a new way. But when were dropped into a What she was looking for, it turns out, Levy’s friend, Alice, was black hole,” she says. was a chance to lend her skills to the diagnosed with FTD in “There was nothing.” broader cause. “It really has been an 2007, she had no idea how many new But true to her nature, Levy was amazing journey to be part of the growth roads she’d end up building as a result. determined to find her way out of of the organization, and then be able to Alice had no close family available to the black hole and into the light. have an impact on what happens next.” help care for her through the disease. “We started a support group As for the road ahead, Levy is ready And so when Alane Airosus, a friend of thinking that when people came they for the challenge. “We just have to keep Alice’s from childhood asked for help, would know what to do. Of course going. We just have to find the people Levy and some of her other Boston- we were wrong! They were as lost as who bring the drive, the money, the based friends set up a support system we were!” This just motivated Levy connections, and the will to get it done.” they called “Team Alice” to manage all to work harder to find help for Team Because, to Levy, the road may be long, aspects of her care. Levy took on the Alice, and the group of caregivers she and there may be some roadblocks, role of healthcare proxy, and later, foster had brought together. She asked the but the only place to stop is a cure. mom to Alice’s Labrador retriever (a group what they needed. If there were Contributor Nicole Savini is a member of role Levy’s cat is less than pleased with). medical questions, she’d find a doctor. AFTD’s Awareness Committee Aftd News Briefs

Participants are needed for a study to Three new caregiver support groups evaluate the safety and efficacy of the began meeting in January and February, drug davunetide for the treatment of bringing the total number of groups in the progressive supranuclear palsy. For additional U.S. to 52. A new FTD and Lewy body information, go to www.clinicaltrials.gov, caregiver support group in the southwest click Search for Clinical Trials and enter “PSP region met for the first time in January davunetide.” in San Diego, Calif. The group continues to meet from 2 to 3:30 p.m. on the first Grants through the Comstock Wednesday of each month. For details and to Mario Mendez, M.D., Ph.D. Caregiver Respite Program help full- pre-register, call Lisa Snyder at 858-622-5800. time, unpaid caregivers arrange short-term By live webcast, 130 people daytime or overnight care for loved ones The south Atlantic region’s newest participated March 2 in Grand diagnosed with FTD. For more information caregiver support group met for the first Rounds on “The Spectrum of or to apply for a grant, go to Support & time in January in Cary, North Carolina. Frontotemporal Degeneration” Resources on our website, click Finding The group continues to meet at 7 p.m. at the University of North Texas Support and Day Programs & Respite. on the third Tuesday of each month. For Health Science Center (UNTHSC), location and details, contact Tayloire Queen representing the largest partcipation Clinical Tools, Inc. is looking for at [email protected] or 919-796-5752. UNTHSC has had to date. The caregivers to participate in a research study program, presented by Mario to help develop a website for Alzheimer’s In New England, a new caregiver Mendez, M.D., Ph.D., of the AFTD disease and dementia caregivers. The Chapel support group met for the first time Medical Advisory Council, was Hill, North Carolina, company recently in February in Salem, New Hampshire. designed for general practitioners and received funding from the National Institute The group continues to meet every other other clinicians interested in learning on Aging to develop the educational and Monday from 6 to 8 p.m. For details, email more about the diagnosis and care of support website. For more information or to Val Pierce at [email protected] patients with FTD. It is available at participate in the study, go to Newsroom and (please include “FTD Support Group” in cme.edocendo.com. click on Newsfeed on our website. the subject line) or call 603-401-5544. The Association for Frontotemporal Degeneration n Volume VIII, Issue 1: Spring 2011 3 Grants Awarded for FTD Biomarkers

The Association for Frontotemporal Degeneration Allen Roses, M.D., at the Duke Center for Drug Discovery, (AFTD) and the Alzheimer’s Drug Discovery Foundation Durham, North Carolina, $125,000 for Fine-mapping and (ADDF) recently awarded four grants to develop characterization of genetic biomarkers that facilitate the acceleration biomarkers for FTD. Thanks to a generous partnership of drug discovery for frontotemporal dementias; with ADDF, which matches funds raised by AFTD Marcel M. Verbeek, Ph.D., M.Sc., at the Radboud University 2:1, as well as a challenge grant from Lee Danis of Nijmegen Medical Centre, Nijmegen, The Netherlands, Dallas (see story on page 7), $460,000 was awarded. $100,000 for TDP-43 and tau as cerebrospinal fluid biomarkers “We were tremendously pleased with the applications to discriminate frontotemporal dementia subtypes; and we received; very high-quality projects were submitted by Victor Villemagne, M.D., at the University of Melbourne, excellent scientists from a wide range of scientific specialities Melbourne, Australia, $135,000 for [18F]-THK523, a novel in and institutions,” says AFTD Board Member Philip Lovett. vivo tau imaging agent. “The grants we have awarded address the full breadth of Biomarkers are biological factors that can be measured (like challenges we face: finding biomarkers for accurate diagnosis, measuring cholesterol in the blood or viewing a tumor on as well as those that will measure progression of disease. MRI), and thus inform the clinician as to what is going on in a They also incorporate a promising variety of tools available: patient’s body. Because FTD is a neurodegenerative disease that genetics, samples from cerebrospinal fluid and brain imaging.” occurs in the brain - a part of the body from which it’s difficult Receiving grants were: to take a direct sample - it can be hard to identify specific William Hu, M.D., Ph.D., at the Emory University School cause and progression of the disease without biomarkers. of Medicine, Atlanta, Georgia, $100,000 for CSF Biomarkers of Biomarkers are the current quest of many neurological diseases. FTLD-TDP and FTLD-Tau - A Multi-Center Study; To read more about these projects, please go to www.theaftd.org. Dickerson, Lipman Slated for Annual Meeting Join Us June 10 in Cambridge, Massachusetts

eurologist , will give the AFTD has designed sessions for spouses Bradford opening address. Lipman and partners, families with school age N D i c k e r s o n , lost her husband, Bob, to children, adult children, and extended M.D., and New York FTD in 2009; the New family and friends of people with Times best-selling author York Times published FTD. The sessions, each of which Elinor Lipman will her acclaimed essay and will be facilitated by two healthcare speak at The Association tribute to him, “Sweetest professionals from different disciplines, for Frontotemporal at the End,” in 2010. will offer unique opportunities for Degenerations’s 2011 This year’s attendees to ask questions Caregiver Conference c a r e g i v e r not only of professionals and Annual Meeting, c o n f e r e n c e with expertise in FTD set for June 10 in will provide but also of caregivers Bradford Dickerson, M.D. Cambridge, Mass. participants in similar situations. Dr. Dickerson, director of the with a unique, interactive The caregiver conference Frontotemporal Disorders Unit at half-day education will include a showing of Massachusetts General Hospital program. Attendees may the AFTD film, It Is What and a member of the AFTD choose to participate in one It Is, which chronicles Medical Advisory Council, will of four separate breakout four families as they deliver the keynote address, titled sessions focused on the confront FTD (see story “Frontotemporal degeneration: New issues and challenges that Elinor Lipman on page 10). Conference tools for early diagnosis and monitoring may arise between caregivers Photo courtesy of guests are invited to a set the stage for treatment trials.” and their loved ones with Gabriel Amadeus Cooney reception at day’s end Lipman, the author of nine novels, FTD. Along with staff members at hosted by AFTD’s Board of Directors. including , the basis Massachusetts General Hospital and For more information about the for the 2008 movie of the same name the New Hampshire & Massachusetts conference, visit www.theaftd.org. starring , and Chapter of the Alzheimer’s Association, 4 The Association for Frontotemporal Degeneration n Volume VIII, Issue 1: Spring 2011

New Name (Continued from page 1) “The term ‘degeneration’ emphasizes “We believe this new overarching funding more research, educating medical some of the critical characteristics of term - frontotemporal degeneration professionals about these diseases, and FTD – the gradual and progressive - will stand the test of time.” advocating for and developing much- nature of the degeneration in brain “Only our “D” has changed,” needed resources for our families. cells, as well as variable degrees of the emphasizes AFTD Executive Director “I invite everyone to join with us,” degeneration in cognitive, behavior, Susan Dickinson. “We want to assure she adds. “Working as a community, language, and motor functioning,” everyone that our mission, vision, staff, I firmly believe that together we can says Bradley Boeve, M.D., chair of brand and IRS tax-exempt status remain achieve our vision of: A world where AFTD’s Medical Advisory Council. the same. Most important, we retain frontotemporal degeneration is AFTD will now use “FTD” to our strong work ethic and values of understood, effectively diagnosed, mean frontotemporal degeneration, an knowledge, positive action, collaboration, treated, cured and ultimately prevented. umbrella term that encompasses both respect, dignity and compassion.” For more information about AFTD’s clinical and pathological diagnoses. The “We have ambitious goals for 2011 Strategic Plan, visit www.theaftd.org, clinical diagnoses include: language and beyond,” Walter says. “They include click About AFTD and Strategic Plan. disorders (primary progressive aphasia and its three subtypes); movement disorders (progressive supranuclear palsy and corticobasal syndrome) and the behavioral disorder, which is known by a variety of names: behavioral variant FTD, bvFTD, frontotemporal dementia and Pick’s disease. The main proteins involved in causing FTD are TDP-43, tau and FUS. “We feel this change will be helpful to our families,” says Helen-Ann Comstock, founder of the organization.

Research Advances (Continued from page 1) spring in the scientific journal,many experts in the FTD field, and all are FTD clinical trials Alzheimer’s Research and Therapy, and finalizing development of infrastructure There are a handful of FTD clinical will provide researchers and funding methodology for research devoted to drug trials in progress in the U.S. agencies with information to develop FTD. A key component of this project is and abroad. Several more studies are key programs while also minimizing a central database to be used by various in the development stages, and some duplication of efforts. (To see the full clinical centers, so that patient data can forthcoming conferences involve analysis, go to www.theaftd.org and be pooled effectively (and anonymously). experts from academia, federal agencies, click on Research, AFTD Research This effort is taking advantage of and the pharmaceutical industry as Initiatives and Stimulating Research.) the infrastructure already in place in preliminary data is shared and future NIA-sponsored Alzheimer’s Disease trials are planned. Patients and families Funding for FTD research infrastructure Centers, and expands this to include are encouraged to periodically access While many centers around the the clinical, neuropsychological, AFTD’s website and particularly the United States have been involved in neuroimaging, biomarkers, genetics, ClinicalTrials.gov website and enter FTD research over the past several years, and pathologic domains specific for FTD, PPA, PSP, CBS or CBD (or there has not been any infrastructure FTD. This infrastructure will greatly the full terms for these abbreviations) built to foster collaborative research enhance collaborative research in to remain updated on clinical trials. across many sites. Recognizing this FTD, which is critical for quickening weakness in 2010, the National Institute the pace for discovery. AFTD extends PPA nomenclature and characterization on Neurological Disorders and Stroke its gratitude to NINDS and NIA for The older terminology with the two (NINDS), the National Institute of devoting their efforts and attention variants of primary progressive aphasia Aging (NIA), and AFTD convened to funding toward FTD research. (Continued on next page) The Association for Frontotemporal Degeneration n Volume VIII, Issue 1: Spring 2011 5 Dickson to Receive Prestigous Potamkin Prize

in Pick’s, Alzheimer’s, and Related The Potamkin Prize is made Diseases honors researchers for possible through the philanthropic their work in helping to advance contributions of the Potamkin family the understanding of dementia. The of New York, Philadelphia and Miami. award recognizes major contributions Robert Potamkin is a former member to the understanding of the causes, of the AFTD Board of Directors. prevention, treatment, and cure for The goal of the prize is to help attract FTD, Alzheimer’s, and related diseases. the best medical minds and most Dr. Dickson is receiving the dedicated scientists in the world Potamkin Prize for his research to the field of dementia research. involving tau, a brain protein that is abnormal in a number of different AFTD is proud to recognize neurodegenerative disorders, including all MAC members who have Dennis Dickson, M.D. FTD and Alzheimer’s disease. received the Potamkin Prize. Past “Neuropathology is the science prize winners include: Dennis Dickson, M.D., a member that underpins all other brain of AFTD’s Medical Advisory Council, sciences in that it describes the Karen Duff, Ph.D. has been selected as a recipient of the changes in the brain related to the Michael Hutton, Ph.D. 2011 Potamkin Prize for his work in underlying disease process,” Dr. Bernardino Ghetti, M.D. the study of dementia. Dr. Dickson, of Dickson says. “Understanding the Virginia Lee, Ph.D. the Mayo Clinic in Jacksonville, Fla., neuropathology of dementias is the is the seventh member of the Medical first step towards developing better Bruce Miller, M.D. Advisory Council to receive this award. methods to diagnose, treat and John Trojanowski, M.D., Ph.D. The Potamkin Prize for Research eventually prevent these disorders.”

(Continued from page 4) (PPA) known as progressive nonfluent bvFTD nomenclature and characterization improving diagnosis and clinical care for aphasia (PNFA) and semantic The International bvFTD Criteria FTD patients. Two education initiatives dementia (SD) has served the field well. Consortium is continuing their work AFTD is sponsoring this year are a one- Considerably more knowledge has been on validating updated criteria for the hour online CME training course and a gained in the PPA field, leading a group of diagnosis of frontotemporal dementia, or full-day course on the neuropsychiatry experts to develop updated terminology behavioral variant FTD (bvFTD). These of FTD at Columbia University. There and clinical characterization of what are new criteria will be published in the near is much work to be done in this area, now known as the three key variants future, with the hope that they will allow but it is exciting to see growing demand of PPA – the nonfluent/agrammatic clinicians to better identify who has FTD for these learning opportunities. variant (formerly the PNFA variant), (which is again important for clinical the semantic variant (formerly the SD trials) and who has atypical Alzheimer’s Summary variant), and the logopenic variant; disease, atypical Lewy body disease, the These are exciting times, but our the publication describing this new “FTD phenocopy” (displaying symptoms work is far from done. We are seeing information will be published shortly. By of bvFTD without actually having progress in areas of diagnosis, care applying the new criteria for diagnosis, the disease) or some other disorder. and drug development. To reach these clinicians will be able to diagnose goals, it is critical that patients and patients more readily and accurately. Education of primary care clinicians families are active participants with This will become increasingly important AFTD and several members of the our research community. AFTD plays for forthcoming clinical trials since Medical Advisory Council are working an important role in bringing our eachPPA variant tends to be associated to communicate these research advances community together. I encourage you with a particular dysfunctional protein. to primary care physicians, thereby to stay informed and stay involved. 6 The Association for Frontotemporal Degeneration n Volume VIII, Issue 1: Spring 2011

Donations Honor Loved Ones Gifts received October 16, 2010 - January 31, 2011

In Honor Of Ronald Duncan The Kuhlman Family Holly Shamsai Jerry L. Aden Kathy “Kit” Dusky Arnette Lester Orville & Patti Sherrod Dr. Lawrence Albert George Edwards The Lester Family Billy Spradley William Allen Janice Ehrmann Paul Lester John Stackhouse Renee Bachant Frank Engelkraut III John Mackey Al Stevenson Jon Berkley Anne R. Everard John & Sylvia Mackey Edward Streiff Dee & Jerry Behrens Mike Fenoglio Phyllis Malloy Regina Tinneny Steven Besch Petet Findlay Susan Marcus Barbara Tinsley Brad Bishop Steve Gebhardt Kenneth Martin Stephen Tipton Sandra Bishop Kathy & Al Getson Simone Martin Ellen Trosclair Polly Bloor Victoria Glandon Matthew Matherne Carol Tyler Richard Blount Harriett S. Grant Bucky McAfee Helen Van Son Harold Bolitho Ted & Nancy Groseth Jennifer McConathy Friends & Family of Jeff Van Son Thea Bower Alice Guinez Bonnie Miller Michele & Jeff Van Sonand Family Ann F. Brawley Wanda Guirguis Louise B. Miller Bruce Viemeister Catherine W. Broer Rachel Hadas Arthur Moyer Jane V. Ward Michelle Brown Pat Halligan Nancy Mary Waters Bill & Michelle Brown and Family Doug Hanks John M. Nies Sally Watson Jim Buchanan Allen G. Hansen Frank Nitikman’s David Westmoreland Robert T. Buchholz The Herl & Martens 70th Birthday Della Whatley Mike Castle Marriage Charles William Pasic Judy Windhorst Chip Chaimberlan Mary Hesprich Doug Pearson Nancy B. Young Stanley Chrzanowski Jon Hickey Gibby & Doug Pearson Chris & Christopher Yurkanan Larry Cline Anna White Hill Camilla Perry Susan Connolly Frank Trent Hill Marian Philp Mary Ann & Bruce Coon and Family Betsy Horn Anna Pontrelli In Memory Of Sally Watson Cushmore Pete Horn Skip Schnierow’s Glenn G. Andrews Susan Danis Walter Jones 80th Birthday Frances Angelino Wilfred Denise Tim & Pamela Kinkead Carol Schumaker Emerson R. Avery, Jr. Clifford Donnelly Peter & Nancy Kohudic Paula Scott William “Bill” Basile

Matching Gift Programs Have Many Benefits

When Michael Angello’s personality started working there, but she notes, changed from mild-mannered to “Employees might not always know argumentative, his family took him from their company has such a program.” one specialist to another to determine While no one wants to hear that the cause. It took four years before their loved one has FTD, the diagnosis Angello received a proper diagnosis: helps families understand their the 65-year-old steelworker from uncharacteristic and often disturbing Pittsburgh had FTD. Unfortunately, behavior. This understanding leads Michael and Deanna Angello the Angello family’s experience is not to better relationships with, and among workers, enable companies to unique; too often individuals with FTD care for, the person with the disease. diversify causes, improve corporate are misdiagnosed. Since her father was Donations to The Association for image, and, of course, allow for tax diagnosed with FTD, Deanna Angello Frontotemporal Degeneration can deductions. To find out if your company has donated regularly to AFTD. And help raise awareness and fund research matches donations, check with the her employer, the large pharmaceutical to help ensure that families receive human resources department. If your proper diagnoses in a timely manner. company Pfizer, has been matching company does not have a matching gift each charitable donation 1:1. This Many companies do have program, encourage them to start one. means that if she donates $200, AFTD programs similar to Pfizer’s. will receive $400. Deanna Angello, Matching gift programs have many Contributor Catherine Savini is an avid fundraiser, has been aware of benefits: they strengthen employeeassistant professor of English at Westfield Pfizer’s matching gift program since she recruitment, cultivate positive morale State University in Westfield, Mass. The Association for Frontotemporal Degeneration n Volume VIII, Issue 1: Spring 2011 7

AFTD is grateful for these gifts, which fund research, education and support. David A. Berkowitz Robert Frock Charles Lawson II Alan Rasmusson Diane Irene Stephen Sondra Birnbaum Mary Gutierrez John K. Layne, Jr. Richard Raybourne Linda Stowell Norman K. Bogard Richard J. Hanechak Rhoda Liken Donald Richter Eve Swanson Marilyn Bolyard Robert Hatfield Radford D. Lovett, Sr. Elsie Rodgers Daniel R. Sztraicher Charles E. Brown Harold Hedaya Joseph Mahoney, Sr. Douglas R. Rogers Robert J. Sykes, Jr. Tom Buchholz Robert L. Hermann Edward McAndrew Louis T. Romeo Dr. Harold Teplitz Cindy Cardosi Patricia Heyden Mary McKee Carol Rosey Daniel Thomson George E. Carlson, Jr. Jon Hickey Ann McLellan Richard Rummel Howard Thorn Donald Carnig Carol Hicks Anna Marie McNeil Richard A. Ryan Carmella Vernick Willis Caterson Melody Hicks Dennis McWhirter Dale Sampson-Levin Robert “Robin” Logan Ward Jay Cayzer Tom Hiebert Moussa Menasha Dennis W. Sauer Timothy Ware Jill Clayton Lyle J. Hopler, Jr. Susan W. Mertz Frank Schmitt Mary Waters Karen Sue Cleveland Linda Hubbard Theodore Midurski Shelley Barbara Weiss Dr. Thomas J. Clowes Dick Huckfeldt Gary Miller Popkin Shenian John E. Wilhelm Emilie M. Cobb Dr. Thomas Jackson Dennis Mixdorf Thomas Skakum Gail Wood Douglas Collins Roger T. James John Mockler John Solberg Deborah Woodcock Louis Comparin Karen Stevens Jones Larry Morris Dennis L. Steffen David Zomback Craig Comstock Don Judge Rev. Leonard Nadeau Steve Conneally Anna Kahn Marie Newman Kirby Culp Dr. Phillip Kamish Kingston Columbus Norman In lieu of flowers… Joan Dangelo LeRoy A. Kasberg Terry O’Connor Families who wish to direct memorial donations Bonnie L. Dillon James Kearney Eugenoula Papadopoulos to AFTD are encouraged to call our office. Richard Drayton Robert Devere Keil Hugh M. Parrish AFTD can mail you donation materials or you Janet Dunne Joan P. Kingston Jean Peterson can download them from the AFTD website. All Kathy “Kit” Dusky Joe Kneuzer Francis J. Pezze donors will receive letters of acknowledgement William W. Eaton, II Karen Kohn Janet Potter and families will receive a list of donors. Gordon Elkins Diane L. Kukac Dottie Powell Mary Ellen Forte Ben Ellis Laden Julienne Prineas To download materials from our website, go Connie L. Frederick Cynthia E. Rydell Lane Cynthia Rambo to About AFTD and Get Involved, and click on Margareta Fris Domenica “Mae” LaPiana David Rasmussen Donate and Contribute Electronically. AFTD Meets the Danis Challenge

hanks to everyone who biomarker is usually a protein or other contributed to the fall campaign substance that can be measured in the T for biomarker research, AFTD blood or cerebrospinal fluid, or it can be was able to meet the Danis Challenge a compound that attaches to a specific by raising $40,000. As a result, Lee protein in the brain that “lights up” on Danis of Dallas and AFTD’s partner imaging, such as a PET scan. Examples of in drug discovery, the Alzheimer’s biomarkers include cholesterol or blood Drug Discovery Foundation (ADDF), pressure to assess cardiovascular health. have matched those funds 3:1. Biomarkers can be used to determine Last year, Danis, whose wife, Susan, the protein that is causing disease, and has FTD, issued a challenge to other thus provide an accurate diagnosis. They donors to help speed the path to FTD can identify disease in the early stages, drug discovery by matching his gift of Lee Danis (left) of Dallas issued a before symptoms become evident. $40,000. The Danis gift, its challenge challenge to other donors to help speed They can track progression of disease, and the match added an additional the path to FTD drug discovery. His wife, determine which patients qualify for $160,000 to the $300,000 already Susan, was diagnosed in 2009 with FTD. clinical trials, demonstrate drug-target awarded for the development of FTD interaction in the brain, and measure biomarkers (see story on page 3). Beth A biomarker, which is short for effect of a drug on disease progression. Walter, chair of AFTD’s Board of biological marker, is anything that can “Currently there are no reliable Directors, says, “This is a tremendous be measured to indicate the biological biomarkers for FTD,” says AFTD boost for our research efforts.” status of an organism. In practice, a Executive Director Susan Dickinson. 8 The Association for Frontotemporal Degeneration n Volume VIII, Issue 1: Spring 2011 People with FTD Respond to On-Line Survey here is an important change Fifty-seven percent were community and taking place in the field of diagnosed within the past year other resources, T frontotemporal degeneration and another 29 percent within the most frequent (FTD). People diagnosed with FTD the past two years. A range of response (8) was disorders want more information FTD subtypes were represented; that none are and support that address their the most frequent response available. Other needs, not just those of caregivers. selected was FTD, but unsure people noted As diagnosis becomes more accurate, what subtype, at 39 percent. that the Internet, people with FTD may become aware Thirty-three percent identified doctors or medical of their condition at an earlier stage language disorders, and 15 centers, AFTD, in the disease’s progression. To date, percent identified behavioral the Alzheimer’s diagnosis at a later stage has meant variant FTD (Pick’s disease). Association, that support and education efforts Was it difficult to get a The on-line survey for the VA hospital focus primarily on caregivers. The vast diagnosis? “No,” responded people diagnosed with FTD and the FTD majority of resources currently available one person, “not after I got will help AFTD develop new Support Forum are for caregivers rather than directly with the right doctors.” The offered some initiatives and services. for people diagnosed with FTD, importance of having access to helpful resources. but AFTD is a knowledgeable Information for caregivers fails to working to meet physician was address the fundamental question of patients’ needs. To date, diagnosis at a later echoed in a “how do I live with this as a patient?” Last fall, stage has meant that support number of People diagnosed with FTD are AFTD began and education efforts focus c o m m e n t s . hungry for assistance with ways to reaching out to primarily on caregivers. S i x t y - t h r e e maintain independence and dignity. this important percent of Some want to know how to help family segment of the participants members recognize and accept changes FTD community. People diagnosed indicated it was difficult to get a in their prior abilities. They want to with FTD were invited to take a diagnosis; 37 percent said it was not. talk with other people who have a 12-question, on-line survey, titled The often lengthy process is a source similar diagnosis. Several people who “First Person Informal.” The survey of frustration for many. “Doctors kept live alone noted particular concerns asked people to respond to questions trying to pin me into a depressed or about not knowing what to expect. related to obtaining a diagnosis, sources h o r m o n a l People of information, current challenges and woman role... . Patients reported relying on responding ways AFTD can be more helpful. So much of my to the survey The thirty-five people who responded time (which I the Internet to find information urged AFTD to to the survey during the first three don’t have) was about the diseases, while many provide more months it was available stressed listening wasted,” wrote recognized that not all such support and to patients and expanding supports. one woman. coping skills AFTD can be most helpful, wrote one P a t i e n t s information was reliable. for the patient, woman, if it “provides more support, r e p o r t e d spread the coping and insight for the patient. relying on the Internet to find word about FTD, educate doctors with Caregivers need support also. But there information about the diseases, while guidelines for screening and referral, and is a window of opportunity with an many recognized that not all such make current information on research early diagnosis for doctors, nurses and information was reliable. In addition to and medical initiatives easily available. caregivers to learn from patients and the Internet (8 responses), people cited People diagnosed with FTD therefore learn how to help others.” AFTD, a medical center or doctor, who have not completed the Survey respondents included nearly the National Institutes of Health, the survey are encouraged to do so at equal numbers of men and women, Alzheimer’s Association, the University http://www.surveymonkey.com/s/ ranging in age from 40 to over of California, San Francisco Memory AFTDfirstperson. Responses are 70. Seventy-seven percent of those and Aging Center website, and the FTD compiled periodically and will be people said they have experienced Support Forum as helpful resources. used to develop future materials and symptoms for one to five years. For information on medical services, initiatives. The Association for Frontotemporal Degeneration n Volume VIII, Issue 1: Spring 2011 9 On Coping How Hard Times and ‘The Snow Queen’ Gave One Caregiver Strength When Rachel Hadas’s husband, more like pieces of a case history. George Edwards, a composer and And then there was poetry. Many of professor of music at Columbia the poems that sustained me during University, was diagnosed in 2005 this time were pieces I’d thought with dementia, Hadas turned to several I already knew. But again, they old friends – Charles Dickens, Edith spoke to me with fresh voices… . Wharton, and Hans Christian Andersen Though many of them are certainly among them – for understanding and beautiful, these works of literature Rachel Hadas is Board of strength. In an excerpt from the prologue didn’t soothe or console or lull me Governors Professor of English to her new book, Strange Relation: A with their beauty. On the contrary, Memoir of Marriage, Dementia, and they made me sit up and pay attention. at Rutgers University in Poetry, the award-winning author says Each in its own way, they helped me Newark, New Jersey. literature helps her cope with loneliness, by telling me the truth, or rather a loss, and her husband’s illness. truth, about the almost overwhelming conversation, a dream, a walk, or It’s impossible to say precisely situation in which I found myself. yet another doctor’s appointment. I when the symptoms of George’s I learned what isn’t always obvious rediscovered…that writing what you illness began to show themselves. under such circumstances: I wasn’t remember helps you to remember Just as most diagnosis of dementia alone. Other people, these works more. Turning life at its bleakest or must rely on hindsight, so [Strange reminded me, had experienced, if dullest into prose was absorbing and Relation] proceeds by way of several not precisely my dilemma, then their also rewarding; the more I wrote, the flashbacks. I wrote most of it between own, equally hard or harder. Those more I remembered and understood. 2005 and 2007, years when I was people had found the courage to face I’m a teacher, but first and foremost I living with George but in a zone of and describe situations which might am a poet. Since my father’s death when deepening silence. During those years, easily have reduced them to silence. I was 17 years old, poetry has steadily literature was often my most faithful If silence was the enemy, literature helped me not only to express what I companion, so [Strange Relation] is was my best friend. No matter how was feeling at a given time, but also in part a book about literature. More lonely, frightened, confused, or angry to figure out what I was thinking… precisely, it’s about various literatures. I felt, some writer had captured the For some people, help might well There were books toward which our sensation. How does it feel when come from their faith in God. For me, situation steered me that I wouldn’t people you thought were your friends help came from a source that seemed have read turn away from equally inexhaustible: poetry…. o t h e r w i s e , illness? When I don’t want to minimize the tragedy books with I learned what isn’t you’ve almost of George’s illness. It has gradually eloquent always obvious under such forgotten what and relentlessly destroyed his mind titles like circumstances: I wasn’t alone. love is like? and personality and has deprived me Stolen Mind, When you and my son of a husband and father Death in Slow are forced we loved. No silver lining can restore Motion, Ambiguous Loss, and What If to choose between unpalatable George’s lost brilliance to himself or It’s Not Alzheimer’s? A very different alternatives? Frost and Aeschylus to us. Nevertheless, it is true that this group included books and stories I and Merrill knew the answers to ordeal has eloquently reminded me had read years before and that I now these questions – questions doctors of the sustaining power of literature. saw in a new light. These included don’t like to ask, let alone answer. In Part of what I hope to do in [this Dickens’s David Copperfield and doctors’ waiting rooms or in the quiet memoir] is to share that power. Hard Times, Wharton’s Ethan Frome, evenings after George had gone to Reprinted from Strange Relation: James’s The Portrait of a Lady, and bed, or on the train to work, I read and A Memoir of Marriage, Dementia, Andersen’s “The Snow Queen,” read. Thank God I could still read. among others. Greek myths, too, And I could write. Some of the and Poetry by Rachel Hadas © 2011. took on a new urgency [and]… chapters in [Strange Relation] were Published by Paul Dry Books, www. felt anything but remote; they were in response to my need to record a pauldrybooks.com. 10 The Association for Frontotemporal Degeneration n Volume VIII, Issue 1: Spring 2011 Awareness AFTD Film Reaches Wider Audience After scores of caregivers and with families identified by AFTD, healthcare professionals contacted and filming last August in four cities. The Association for Frontotemporal The film was piloted throughout Degeneration (AFTD) to request the fall with AFTD’s Medical copies of the film, It Is What It Is, Advisory Council, board members, Frontotemporal Degeneration: Tragic caregivers and health professionals. Loss, Abiding Hope It Is What It Is , AFTD revised “ has been widely Chris (left) and Christopher Yurkanan the initial limited distribution plan embraced as a moving and powerful of Austin, Texas, are among the and released the film earlier this depiction of FTD,” says Sharon month for broad individual use. Denny, AFTD program director. families featured in the film. “Families have always done the most “However, it does not present embraced by family members, to raise awareness of FTD,” says Beth details of the diseases or reflect health professionals, and community Walter, AFTD board chair. “This the real hope of current research.” service providers as a tool to promote film will make that easier for them.” The film was initially created understanding of the needs of FTD The film, which runs about 17 so that it could be presented by patients and caregivers. A large minutes, weaves together the stories professionals familiar with FTD who assisted living organization has of four families facing frontotemporal could provide context and answer purchased 90 copies and incorporated degeneration. Each journey is unique, questions. “However, we discovered the film and FTD into their dementia but the experiences are common that caregivers were eager to share the training curriculum for staff members. to many who face these diseases: film with others and that the original “This is so exciting for us,” Walter puzzling early symptoms, difficulty plan was too limited,” Denny says. says. “For a long time AFTD with diagnosis, a lack of emotional Adjustments were made to frame has wanted to visually show the support and family hardships. the contents of the film and enable faces of FTD and to connect new The project began in December wide distribution to individuals. The audiences with the reality of these 2009 when Joseph Becker, the founder DVD now includes a two-minute diseases. This film will help create and CEO of thinkfilm, inc., contacted introduction by Walter and comes awareness and bring about change.” AFTD after seeing a piece about packaged with printed material The DVD is available through AFTD FTD on CNN. Discussions led to a on FTD and progress in research. for $10 plus shipping and handling. For concept for the film, phone interviews AFTD expects the film to be information, go to www.theaftd.org. Mackey Joins NFL Game Plan MAC Member If she hasn’t been forums designed to educate, motivate and Featured in CTV there already, Sylvia mobilize communities to address issues Mackey may soon be such as dementia, depression, financial Report on FTD coming to a town near and relationship stress, and drug and Tiffany Chow, M.D., a member of you. Since August, the alcohol abuse among athletes at all levels. the AFTD Medical Advisory Council, AFTD board member Ultimately, the goal is to develop a “game was interviewed by CTV News, has traveled to nine plan” or strategies for preventing and Canada’s largest private broadcaster, Sylvia Mackey cities across the U.S. reducing the risk of dementia and addressing for a story on FTD (“Doctors warn of – from Atlanta, New stigma related to brain disorders, Mackey under-diagnosed form of dementia,” Orleans, Washington, D.C. and Buffalo to says. The program is sponsored by the NFL CTV News, Toronto, Jan. 16, 2011). Boston, Denver, Miami and San Francisco and the Satcher Health Leadership Institute Dr. Chow, a neurologist and senior – to serve as a guest speaker at the “NFL of Morehouse School of Medicine in Atlanta. scientist at the Rotman Research Community Huddle: Taking a Goal Line Stand Mackey is married to NFL Hall of Institute at Baycrest in Toronto, for Your Mind & Body.” In February, Mackey Famer John Mackey, who was diagnosed spoke with CTV medical reporter took her message to Dallas just four days in 2001 with FTD. In addition to her role Avis Favaro. The broadcast notes that before the kickoff there at Super Bowl XLV. on the Board of Directors, she is a member many cases are not diagnosed because The “NFL Community Huddle” of the AFTD Awareness Committee. symptoms are at first subtle and program, which is free and open to the Her forthcoming speaking engagements gradual or may mimic other disorders public, is part of a nationwide series of will be posted on our website calendar. such as depression. 10 The Association for Frontotemporal Degeneration n Volume VIII, Issue 1: Spring 2011 The Association for Frontotemporal Degeneration n Volume VIII, Issue 1: Spring 2011 11 Tell 10 People Events

Runner Raises $34K in Father’s Memory; ADDF Matches 2:1

When Russell Zomback decided funds 2:1, for a total of $102,000! to run for the first time in the New Zomback originally planned on York City Marathon, he planned on running the marathon in honor of his raising about $5,000 for AFTD. He father, David. Sadly, David Zomback underestimated himself – by $29,000! died on Sept. 23, 10 years after he By completing the Nov. 7 marathon, was first diagnosed with FTD. And Zomback, of Long Island, raised so Russell Zomback ran in memory $34,000 for FTD drug discovery. Since of his father instead. He met his then, the Alzheimer’s Drug Discovery goal of finishing under 4:30, coming Russell Zomback (right) ran the Foundation (ADDF), AFTD’s partner in at 4:29:21. Thank you, Russell! marathon in memory of his father, in drug discovery, has matched those David, who died in September.

‘Food for Thought’ Register Now for ‘Scoot for Scooter’ Raises $10K Dedication Balloons Available Nearly 100 people came out on Nov. 14 for The 2nd Annual “Scoot for Balloons will be printed with the “Food for Thought: Four Fabulous Courses for Scooter” 5K & 1-Mile Walk & honorees’ names and then displayed the Benefit of AFTD,” which raised $10,000. Run will begin at 10 a.m., rain at the event. For more information The Sunday afternoon luncheon was hosted or shine, on Sunday, May 15, at or to register, go to www. by Lucy Pontrelli, M.D., and her father, Nick, Sherwood High School in Sandy scoot4scooter.com. To purchase in honor of Lucy’s mother and Nick’s wife, Spring, Md. The Walk & Run, a balloon, go to the registration Anna, who has FTD. “Food for Thought,” which benefits AFTD, honor’s page. If you are registering for the which was held at Rossini’s Restaurant in Dave “Scooter” Scaggs, a retired event and wish to add a donation midtown Manhattan, included a four-course soccer and basketball coach who for a balloon, there is a field where Northern Italian feast, a selection of fine was diagnosed in 2008 with FTD. you can indicate an honoree’s wine, live opera music, and several tributes Last year, event organizers doubled name. If you are not participating by Pontrelli family members and friends their original fund-raising goal in the event but would like to honoring Anna, who attended the event. by raising a total of $40,000. purchase a balloon, click Register New to this year’s event are (on the left), then choose the dedication balloons in honor of, or option to purchase a balloon only. in memory of, loved ones with FTD. ‘Quest for the Cure’ Set for May Register Now; Sponsorships Available

The 4th Annual “Quest for the For more information about Cure” Golf Tournament benefiting the day’s schedule of events, fees, AFTD and FTD research will be held sponsorship opportunities and on Monday, May 9, at the Rancho registration, go to www.AFTDgolf. Lucy Pontrelli, M.D. (center) welcomes Murieta Country Club, Rancho com. “Quest for the Cure” has raised Edward Huey, M.D., and author Elinor Murieta, Calif. Registration fees $75,000 on behalf of AFTD in just Lipman to “Food for Thought: Four include 18 holes of golf, use of cart, three years. It is organized by AFTD Fabulous Courses for the Benefit of AFTD” lunch and buffet dinner, giveaways, Board Chair Beth Walter and her at Rossini’s Restaurant in New York. raffle tickets and mulligans. family. AFTD is grateful to the organizers and supporters of the Tell 10 People events. For information about forthcoming events, visit the AFTD website. Prsrt. Std. U.S. Postage PAID Radnor Station Bldg. 2, Suite 320 Lansdale, PA 290 King of Prussia Road Permit #444 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 Beth Walter Darlene M. Ryan Bradley F. Boeve, MD Walter A. Kukull, PhD Chair, California Treasurer, Texas Chair, Mayo Clinic, Rochester University of Washington Francine Laden, ScD Susan Eissler Bernardino Ghetti, MD Virginia M.-Y. Lee, PhD Vice Chair, Massachusetts Recording Secretary, Texas Vice Chair, Indiana University University of Pennsylvania Thomas D. Bird, MD Carol F. Lippa, MD Earl W. Comstock Sylvia Mackey University of Washington Drexel University Washington, D.C. Maryland Tiffany W. Chow, MD Irene Litvan, MD Bryan Dalesandro Zbyslaw J. Petryka, PhD University of Toronto University of Louisville Pennsylvania California Bradford C. Dickerson, MD Ian R.A. Mackenzie, MD Jary Larsen, PhD Colleen Quinn Harvard University University of British Columbia, Vancouver California Washington, D.C. Dennis Dickson, MD Mario Mendez, MD, PhD Emily Levy Bruce L. Richardson Mayo Clinic, Jacksonville University of California, Los Angeles Massachusetts Colorado Karen Duff, PhD M.-Marsel Mesulam, MD Philip H. Lovett Joanne Sackheim Columbia University Northwestern University New York California Jill Goldman, MS Bruce L. Miller, MD Columbia University University of California, San Francisco Staff Murray Grossman, MD, EdD Jill Murrell, PhD Susan L-J Dickinson, MS Matthew Sharp, MSW University of Pennsylvania Indiana University Executive Director Program Coordinator Michael Hutton, PhD Rosa Rademakers, PhD Eli Lilly & Co. UK Mayo Clinic, Jacksonville Sharon S. Denny, MA Michelle Leahy Andrew Kertesz, MD, FRCP c Howard Rosen, MD Program Director Office Manager University of Western Ontario University of California, San Francisco Chuck McDevitt David S. Knopman, MD John Q. Trojanowski, MD, PhD Communications & Marketing Director Mayo Clinic, Rochester University of Pennsylvania

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