Volume XI, Issue 1 Spring 2014 AFTD Kids and Teens Our Children Are Not Alone by Amy Eissler Explore. Learn. Connect. Two parallel sites These three powerful words are In order to provide age-appropriate used to describe the mission of a new information that is relevant to a resource designed to meet the unique range of young visitors, the website needs of children and teenagers is split into two separate sites--a who have a parent or loved one with site designed for kids (roughly ages frontotemporal degeneration (FTD). 4-11 or 12) and a site designed for In an effort to provide these youths teenagers (roughly 13 and up). While with the information, community and the site is designed to be explored support they need, The Association of independently by children, not all Frontotemporal Degeneration (AFTD) children will be interested in or ready is excited to announce the launch for all the information at once. of a new website “AFTD Kids and A Letter to Parents, available Teens” (www.aftdkidsandteens.org). through the home page, encourages parents to preview www.aftdkidsandteens.org “FTD is a progressive disease the site to decide how best to with many variants, creating lots Through the site they can develop introduce it to their child. of changes at home for families some comfort with the situation, and loved ones. AFTD Kids and recognize they are not alone and find The basic structure of both sites is Teens offers kids a chance to explore empowerment to cope, ” said Sharon similar. Each includes five sections and learn on their own terms. Denny, AFTD program director. (Continued on page 8) Inside This Issue AFTD Receives $1 Million Gift Spotlight On he Association for Frontotemporal AFTD’s goals for the next five years.” John Whitmarsh...... 2 Degeneration (AFTD) is pleased In accordance with the donor’s wishes, News Briefs...... 2 to announce receipt of a $1 million AFTD will work with experts on our donation to support research. The gift, Education Conference...... 3 Medical Advisory Council to explore ways which comes from an anonymous donor to leverage this contribution, using it to Participate in Research...... 4 who is a long-time supporter of AFTD, create initiatives that attract and engage will accelerate the association’s strategic Drug Discovery Awards...... 5 new funding partners and researchers for investment in science that will lead to the cause. In so doing, AFTD will build Donations...... 6-7 the first effective therapies for FTD. upon a tradition of leadership in research AFTD Kids & Teens...... 8 “We are tremendously grateful for funding which includes seed funding for this vote of confidence,” noted Jary pilot studies and a two-year Postdoctoral Volunteer Summit...... 9 Larsen, Ph.D., AFTD board chair. “It is Fellowship, as well as partnerships that have With Love...... 10 especially important to have knowledge produced a national clinical FTD database, of this gift as the Board of Directors Food for Thought...... 10 an IPS cell repository, and a drug discovery undertakes strategic planning over the program that has funded seven years of The AFTD-Team...... 11 next six months to develop and implement promising translational research (see page 5). 2 The Association for Frontotemporal Degeneration n Volume XI, Issue 1: Spring 2014 Spotlight On... John Whitmarsh, Ph.D., AFTD Board of Directors

ike many spouses of people with After Barbara’s diagnosis, the from Alzheimer’s disease for health Whitmarsh family was featured in a professionals and lay audiences.” FTD, when John Whitmarsh first segment on the NBC Nightly News started noticing personality changes in John found great comfort in with Brian Williams. John says that his wife he attributed them to a problem his support group, and it was the when AFTD approached him about with their relationship, not a problem group’s leader, former AFTD Board the segment, “I immediately said yes with Barbara’s health. During that member Joanne Sackheim, who with the hope that sharing our story time, one of her best friends stopped sparked his interest in joining the spending time with her and a coworker Board of Directors. “I felt that refused to continue working with her, my research and administrative but it wasn’t until their kids expressed experience in science would enable concern after a Christmas spent at me to make significant contribution home that John began to realize there to the goals of AFTD,” said John. might be a medical issue at hand. Having worked for NIH himself, With this new concern in mind, John has a strong focus on the research John asked Barbara to see a doctor, currently being conducted and is but she refused for months. When optimistic about the advances that she finally agreed, she went through AFTD’s recent increase in funding numerous physicians, tests, and an could bring. “To date we have had initial diagnosis of Alzheimer’s disease. very little money to work with and Finally, a neurologist recognized the yet have made remarkable impact,” initial signs of FTD on an MRI that John Whitmarsh, Ph.D. said John. “My goal would be to had been performed two years earlier, use the funding to leverage more when Barbara was still functioning would help others and accelerate funding, and to continue to focus on well in her highly demanding position research into FTD. In my view, we enabling outstanding young scientists at the National Institutes of Health. need to work to distinguish FTD to devote their careers to FTD.” Aftd News Briefs

Join Us in Vancouver this October! Best Practices in FTD Care - AFTD’s Do you want to help make a Researchers and clinicians from Partners in FTD Care Yahoo Group is an difference in the lives of those affected around the world will convene for 3 on-line forum for professional and family by FTD? Have you considered days at the 9th International FTD caregivers interested in practical approaches volunteering with AFTD? Various Conference, October 23-25, 2014. to FTD symptoms. Expert clinicians and fun and rewarding opportunities AFTD is helping to organize a one- caregivers share effective strategies for care are available. Contact your regional day symposium for caregivers, which management at home and in residential coordinator volunteer to learn will be Friday, October 24. To facilities. www.groups.yahoo.com/neo/ more. Click on your state through register: www.ftdvancouver2014.com. groups/PartnersInFTDcare/info the following link to find your regional coordinator. www.theaftd. Food for Thought volunteer liaisons org/support-resources/us-regions. New Support Groups - Seven new are needed to help lead this year’s support groups have been formed, in: campaign! As AFTD representatives, See you in San Diego! AFTD’s Peoria, IL, Harris County, TX, Puget liaisons maintain contact and provide 2015 education conference will be Sound area, WA (this is an informal support to hosts who are organizing a at the Doubletree Mission Valley on group), Seattle, WA, Toronto, ON, Food for Thought event. If you would Friday, April 24, 2015. Mark your Los Angeles, CA and Fairfax, VA. For like to learn more, please contact Kerri calendars and watch our website a complete list of support groups, visit Barthel, volunteer manager, at kbarthel@ for additional information over the the regional page on AFTD’s website. theaftd.org. coming months. The Association for Frontotemporal Degeneration n Volume XI, Issue 1: Spring 2014 3 AFTD’s 2014 Education Conference & Annual Meeting

n Friday, March 14, 248 people description of her experiences and why O attended AFTD’s education she was eager to be involved with AFTD’s conference and annual meeting in newest resource, the AFTD Kids White Plains, NY. This was the largest and Teens website (see article page 1).

attendance to date for the event, which was The afternoon focused onthe meeting in which Dr. Joel Ross designed to inform and engage the broad approaches to care management and and Dr. Richard Holub answered community of those affected by FTD: coping. It included an opportunity questions about the science and a family caregivers, health professionals, for participants to select one of five clinical drug trial of the compound people diagnosed with the disease, and breakout sessions to dig deeper into a LMTX in behavioral FTD. The study young adults with an affected parent. is currently recruiting at sites across topic of particular interest, and a panel the U.S. For more information on AFTD Board Chair Jary Larsen, PhD, discussion with a former caregiver, the study visit www.clinicaltrials.gov. welcomed participants and encouraged current caregiver and person with FTD.

everyone to learn from experts and Robert Bazell, adjunct professor at Following the conference nearly 200 network with others who understand Yale University and former NBC chief people stayed to network and connect the challenges they face. The morning science and health correspondent, was with others at a dinner reception. featured an overview of FTD and the final speaker and gave the keynote Feedback from the day reflected developments in research by Dr. Edward address entitled “Making Yourselves deep appreciation for the chance to Huey, assistant professor of psychiatry Heard.” He provided examples of how to be together with people who share and neurology at Columbia University’s engage media to help promote awareness a commitment to addressing FTD. College of Physicians and Surgeons. of the disease and impact care, and One caregiver captured the feeling Jill Goldman, MS, CGC, genetic addressed questions from the audience. expressed by many: “Not only did counselor at Columbia University I get a better picture of everything Medical Center’s Taub Institute and Thirty-four people diagnosed with AFTD is doing, but I really was struck Nadine Tatton, PhD, AFTD scientific FTD attended this year’s conference by how powerful and inspiring it was director, addressed genetic research and and two participated as speakers. An to be surrounded by others who are the critical role it plays in advancing informal lunch meeting brought together involved in the FTD community.”

understanding of the diseases and 25 young adults who have a diagnosed Slides from the plenary sessions development of potential treatments. parent and who want to share support

and get more involved with AFTD. and a downloadable version of Susan Dickinson, AFTD executive the conference booklet, including director, started the afternoon with Prior to the start of the conference, material from each breakout session, an overview of AFTD’s growth and pharmaceutical company TauRx hosted are available on AFTD’s website accomplishments over the past year. an informational meeting on the role under “Past Caregiver Conferences”. Olivia Goldring, 18, who lost her mother of tau protein in FTD and Alzheimer’s The 2015 conference will take place to FTD in 2012, delivered a moving disease. About 100 people attended on Friday, April 24 in San Diego. Special THANKS to our Conference Sponsors!

Joyce Shenian 4 The Association for Frontotemporal Degeneration n Volume XI, Issue 1: Spring 2014 Dr. Marsel Mesulam Awarded the Potamkin Prize

r. Marsel Mesulam, Dr. Mesulam was the first to recognize primary Chair of the AFTD progressive aphasia as an independent form of Medical Advisory dementia in the 1980s. “It was not all that long ago Council and Director of the when the terms ‘dementia’ and ‘Alzheimer’s’ were used Cognitive Neurology and synonymously and when memory loss was considered Alzheimer’s Disease Center an invariant feature of dementia,” he said. “This is at Northwestern University, no longer the prevailing opinion. We now know that Chicago has been named there are multiple diseases that can cause dementia as the 2014 Potamkin Prize without Alzheimer’s pathology or memory loss.” winner. The Potamkin Prize is considered the The Prize is sponsored by the American Academy of foremost award for dementia Neurology (AAN) and the American Brain Foundation Dr. Marsel Mesulam research and recognizes major through the philanthropy of the Potamkin family. contributions to the understanding, prevention, treatment Dr. Mesulam will receive the award at the annual and cure of FTD, Alzheimer’s and related diseases. meeting of the AAN in Philadelphia this April.

Research Opportunities on the AFTD website ndividuals interested in participating in clinical patients with the C9ORF72 gene mutation for a 3 research for FTD now have an important new year longitudinal study to gather natural history data. resource. The AFTD Research webpage contains a On the west coast, a 10-week study is testing the subsection titled “Participate in Research,” which FDA-approved drug Nimodipine in GRN mutation for the first time lists four active clinical trials. carriers at the University of California, San Francisco.

TauRx, Inc. is sponsoring a phase 3, multi-site trial In this same section of the website persons diagnosed for behavioral variant FTD patients to test the new with FTD and their family members can find valuable drug LMTX in a year-long study. A 3-month study information on the different types of research studies testing the FDA-approved drug Nuedexta is recruiting as well as questions to ask and how to decide if a FTD patients with pseudobulbar affect at Drexel certain research study is right for you. Bookmark this University College of Medicine, Philadelphia. An site and plan to revisit it often over coming months, as NIH-sponsored clinical trial is currently recruiting we continue to flesh out this important information.

Call for Proposals: 2014 AFTD Pilot Grants

he new Pilot Grant-Request for Proposals (RFP) advance our understanding of behavioral variant is now posted on the AFTD website. From its FTD, primary progressive aphasia, supranuclear inception in 2005, the Pilot Grant program was palsy, corticobasal syndrome or FTD-ALS. The designed to support highly innovative clinical and program is designed to seed original projects with basic science research in FTD. Last year our grant the goal of generating preliminary data toward competition attracted 42 proposals from both national a larger grant application to the NIH or other and international applicants. We welcome projects that public or private agencies concerned with FTD. The Association for Frontotemporal Degeneration n Volume XI, Issue 1: Spring 2014 5

2014 Drug Discovery Awards

Jeff Rothstein, M.D. Donald Lo, Ph.D.

FTD is proud to announce the acid) byproducts in nerve cells Dr. Lo has developed a new way recipients of our 7th annual grown from the C9 stem cells (For to screen drugs for neurological A grant program which is run more on the advances from last year’s diseases that uses a thin slice of rat in partnership with the Alzheimer’s award, go to www.sciencedaily.com/ brain to quickly test hundreds of Drug Discovery Foundation to releases/2013/10/131016123022. potential drug therapies on reducing advance drug discovery in FTD. htm ). Dr Rothstein has identified or stopping tau protein-based nerve Jeff Rothstein, M.D. of the Johns biomarkers that would show if cell death. Dr. Lo is interested in Hopkins School of Medicine and these new treatments can inactivate drugs that would affect a type of Donald Lo, Ph.D. of the Duke the C9 gene and help bring this RNA called micro-RNA. Micro- University Medical Center were potential new therapy to clinical RNAs act like control switches for the each awarded $150,000 to support trial. Dr. Rothstein is developing coordinated expression of many genes, their medical research efforts. these markers in partnership with and when they don’t work properly Dr. Rothstein works with stem Isis Pharmaceuticals (Carlsbad, can lead to neurodegenerative diseases cells grown from the skin of ALS CA). “We are very excited about the like FTD. Micro-RNAs are the and FTD patients who have the new findings from Dr. Rothstein’s newest leading edge of drug discovery C9ORF72 gene mutation. With group and are eager to continue in neurological diseases. Dr. Lo is funds from a 2013 FTD Drug our investment in the use of FTD working in partnership with Regulus Discovery award, his group recently pluripotent stem cells for drug Therapeutics (San Diego, CA) which discovered, and was able to treat, the discovery,” said Nadine Tatton, has created custom drug libraries to be toxic effect of C9 RNA (ribonucleic Ph.D., Scientific Director for AFTD. tested with Dr. Lo’s brain slice assay. 6 The Association for Frontotemporal Degeneration n Volume XI, Issue 1: Spring 2014 Donations Honor Loved Ones Gifts received from Oct. 16, 2013 - Mar. 15, 2014 In Memory Of Eileen Eissler Cook Clyde Hilliard Anna McNeil Cecilia Bingham Daly Paula Hinckley Karen McVey Audrey Abadie Ann Cockrell Davis Athena Hiotaky Moussa Menasha James Abbott June Davis Caleb Thomas Hodsdon Susan Warfield Mertz Dorothy Abel Mike Davis Nancy Holm Dereatha Miller Nicholas Abourizk Tony DeGennaro Garfield Horn Norman Miller Rose Alterman Ralph Elmer DeLong Wilfred Andre Houle Thomas Miller Gracie Anders Wilfred Denise Miffie Houtz Dennis Mixdorf Barbara Anderson Winnie Denlinger Pamela Hughes Mike Mohrhauser Donna Voss Anderson Margaret DeSutter Dennis Hummel Gale Moser Glenn Andrews Norman DeYoung Jerry Hyde Leonard Moskowitz Frances Angelino Axel Dikkers Barbara Jackson Robert Murray Nadia Aquilino Richard Drayton Garret Jakobsson Fereydoon Naghavi Arnaldo Hernandez Arencibia Francis Driksmeier Fred Perry Jenks Marie Newman Anna Held Audette Dotty Drymon Robert Allen Jenness Marie Annette Nichols John Auld Allen Duckworth Douglas Johnson Terrance O’Connor Emerson Avery Ronald Duncan Gilbert Jones Paul Olea Gerard Bannan Aubry Dupuy Jr. Karen Stevens Jones Terrel Pahl Liana Bates Helen Dybvig Beth Sarah Karver Hugh M. Parrish Rod Bedayn Michael James Dziatkowicz James Kearney James E. Peifer Steve Benesh Kaye Meador Early Marcia Jo Kenna Camilla Perry David Berkowitz George Edwards Carole Kipp Seymour “Sy” Pikofsky Linda Bernardin Janice Ehrmann Dee Kirchgessner Anna Pontrelli Paul Berte Barry Eiland Peter Kirk Dorothy “Dottie” Powell Peggy Jo Biggs Mary Einhorn Donald George Kirkpatrick Jaime Pozo Susan Binger Judy Eklund Kathleen Kisela John Querio Sondra Birnbaum Frank Engelkraut III Barbara Knauer Neil Radin Sandra Bishop Anne Everand Peter Kohudic Ian Ravenscroft Paul Blackmon Michael Fenoglio Rita Kornichuk John Renshaw Deborah Blackwell Claudette Filipkowski Beth Sarah Kraver Gail Richards Robert Blair Erica Jane Fischer John Kretekos Don Richter Bonna Bonard Brenda Fitch Nancy Kreutzer Steve Riedner Robert Bornemann Alice Elaine Fleming Diane Kukac Nelson Ring Kenneth Boss Maryellen Tracy Forte Frank Kunovic Elsie Rodgers Carlyn Boxer Carolyn Foster Ben Ellis Laden Joseph Rodrigues Stephen Bradley Torbjorg Fredheim Marc Laflamme Douglas Rogers Robert Braman David Freud Peter Larsen David Ronco Michael Brandt Laurena Friedel Marlyn Lawrentz Patsy Rouke Rosie Braun Evelyn Friedman Charles Alfred Lawson Maria Rowan Suzanne Broudy Robert Funk Linda Kay Hubbard Lemon Marie Floyd Ridgeway Rowden Michelle Brown John Gibbs Arnette Lester Wilbert Rozansky Joanne Bryant-Newtson Andrea Giordano Charles Littles Ilona Salmon James Gregory Budd Robert Carlton Gorder John Litsinger Dale Sampson-Levin Mary Burton Marion Gordon Felix Lopez Alice Sandifer Janet Cardell Tom Grabiak Bobby Ludwig Dennis Sauer Cindy Cardosi Ronald Greenfield Tom Maher Karen Jean Schipper Janeice Carlisle Mary Ann Griffith Phyllis Malloy Gilbert Schlesinger George Carlson Eugene Grimes Susan Marcus John Schloerb Mary Caruso Grover Grimm Gloria Marquis Robert Schmeid Keith Carver Ted Groseth Ken Martin Janice Schuller Jose Cervoni Mary Gutierrez M. Jean Martinez Louise Jeffress Shaw Kevin Chain Albert Charles Hall Ron Martling Popkin Shenian Karen Sue Cleveland Richard Hanechak Carol Matthews Ned Shepherd Lawrence Cline James Harvey Richard Maulorico Stephen Sherman Phyllis Coats Robert Hatfield Kenneth Mayne Kathy Shiflet Emilie Cobb Darrell Hawkins Edward McAndrew Patrick Sidders Jackie Coley Harold Hedaya Jennifer McConathy James Sise Douglas Collins Robert Hermann James McCoy Judith Skubis Robert Collins Louise Hill Silvia McGill Deborah Smachetti Antionette Marie LaMotta Collura Mildred Hill Mary McKee Dennis Smith Craig Comstock Trent Hill Ann McLellan Karen Sommers The Association for Frontotemporal Degeneration n Volume XI, Issue 1: Spring 2014 7 AFTD is grateful for these gifts, which fund research, education and support. John Soublis In Honor Of Parks Griffith Carol Radtke Billy Spradley Alice Guiney Alice Ramsey Brian Stebbins James Adrian Alice Hale Seth Reice Dennis Steffen Elizabeth Almeida Pat Halligan Matthew Reynolds Karen Stevens-Jones Michael Angello Curtis Hanson Harvey Ribbens Elizabeth Stonko Frank Baffa Robert Hartman Peter Robinson Edward Streiff Christine Beaulieu John Heizman Elaine Rose Joan Stuit Trish Bellwoar Thomas Henderson Betsy Rossi Diane Bennett Carol Sumrall Anna Hill Patricia Routt Lee Birch Bernie Susman Linda Howerton Margie Rowell Rick Blount Eve M. Swanson Nicole Huddlestone Kathy Savini Patricia Boorman Richard Huddlestone Dave Scaggs Robert Sykes David Bower Albert Sylanski Joanne Imler Elaine Scales Jillian Bradley Nancy Jackson Merrill Schell Daniel Sztraicher Catherine Broer Ulen Glen Jackson Jacqueline Schneider Joyce Elizabeth Tate The Brown Family Don Jagger Russell Schubert James Taylor William Brunk David Johnson Paula L’Heureux Scott Harold Teplitz Robert T. Buchholz Harold Kahn Holly Shamsai Norine Elizabeth Thomas Sandy Bush Alice Kallus Joyce Shenian Alice Killingsworth Thomsen Betty Ann and Maitland Chase Hannah Kamin Bonnie Shepherd Eileen Thurston David Chiappa Louise Koenig Tommye Showalter Don Tilzer Beatrice Childs Charles Larkin Joanne Silva Ellen Trosclair Rick Childs Deborah Elizabeth Lewis Roberta Sitler Steve Umin Helen-Ann Comstock Horace Lilholt Ellen Solomon John Underwood The Coon Family Lu Linn Allan and Kathy Stackhouse Janet Valley Linda Cooper Jeff Mandel Bucky and Paula Stackhouse Timothy Vance Stephen Crane Allen Marmon John Stackhouse Jeff Van Son Stacey Crowley Shoshana Marmon and Thomas Stevens Maureen Vazquez Ray Cunningham Michael Burns John Stonko Morris Venden Dennis DeLorenzo Joe Marta James Strong Richard Verrette Tony DeMark Gary Matusch John Thompson Bruce Viemeister Bryan Deuermeyer Robert Matusiak Jeff Thredgold Ernest Alfred Wagoner Ralph Doty Robert McCormick Steve Tipton Michael Wallis Ernest Dovidio Janie McManus Mar y Turner Diane Drayson Brian Walther Helen Milano The Van Son Family Kathleen Earl Jane Ward Lois Miller James Vowell John Edwards Christine Cain Weaver Shellie Morcom Beverly Waite S. Gordon Elkins Arthur Moyer Sally Walshaw Libby Webb Bill Fehon Phyllis Weisblatt Judy Mulik Bruce Wardell Debbie Fenoglio Scott Olivero Marianne Warley Rosemary “Cookie” Weiten Patricia Frank Larry Olivieri Page Wilhite Sunny Lynne Joffe Wergen Detlef Frey Donna Paradis Judy Windhorst Sheldon Wexler Bernard Fridovich Coral Paredes Diana Winoker Jerry Wilcox J.A. Fuller Cassie Parker Michelle Wolfe John M. Wisneski Lisa Galgay Dave Parsons David Wolfram Gail Wood Steven Gebhardt Douglas Parsons Alice Wright Glenn Yawger Albert Getson Charles Pasic Ralph Wright Theodore York Victoria Glandon Joseph Pessah Chris and Christopher Russell Ziegler Howard Glick Joshua Pierce Yurkanan Robert Zimnoch Deborah Graham Hershel Portnoy Joan Ziemer Jack Zlotnick Jim Greene Eldon Prybil Stuart Zuckerman

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 the AFTD website. All donors will receive letters of acknowledgement and families will receive a list of donors. To contribute electronically via our website, go to www.theaftd.org. 8 The Association for Frontotemporal Degeneration n Volume XI, Issue 1: Spring 2014

AFTD Kids and Teens (Continued from page 1) that prioritize information, guidance and create a resource for children because examples of how others cope. In addition at the time no other resources existed. to providing factual information about Information, ideas and input were FTD, content focuses on the young collected from AFTD’s Helpline, person’s experience of FTD and changes to AFTD parent telephone support expect at home, in school and within the group, FTD support group members family as the disease progresses. Interactive and various other Awareness activities hosted by kids pages give visitors the individuals. The Task and teens are featured on the site. opportunity to relate to and Force did extensive research share their own experiences into the resources and Kids helping kids with other kids and teens approaches used to support in similar situations, as AFTD recognizes that children are children with parents who resilient and have a tremendous amount of well as tips and tools that have debilitating illnesses. may help them adjust to wisdom to share with each other. One of the In addition, anecdotal most important aspects of the new website the struggles they may information was obtained encounter having a parent is the opportunity it gives children to share from surveys of young their stories and let their voices be heard. with FTD. A final section adults who had a parent gives visitors the chance to Sections titled “Kids Like Me” and “Get with FTD. All of this Involved” help provide the validation that ask questions and offers research was compiled in suggestions on how to get children and teens desperately need when a report written by the facing the difficulties that FTD presents. involved, build awareness Task Force in May 2011. or participate in FTD In 2012 the Task Force After she and her three young children fundraising events. It is also began planning the website lost their father, and her husband, to a showcase for those who and raising money for it. FTD, Michele Van Son was eager to help have done events of which they are proud. develop content for the site. “It is my Catherine Pace Savitsky, leader of hope that one day my kids will log onto Although the two sites have basic AFTD’s telephone support group for structure similarities, the detail and tone AFTD Kids and Teens and encourage parents, was engaged to manage and other kids who are going through what of content within each site is designed to recruit a team of volunteers to develop be appropriate for the targeted audience. they went through.” Van Son said. The kids’ site introduces FTD topics and AFTD Kids and Teens offers When asked about her hope for AFTD provides basic information around a fourth Kids and Teens and the impact it will grade reading level. Fictional characters kids a chance to explore and have on youth Denny said, “Changing of a young boy and girl named Sophie learn on their own terms. the feeling that no one understands is and Connor serve as guides who model our main goal. There is tremendous successful coping strategies and offer words solace and power in feeling understood.” of encouragement throughout the site. the website. “Parents are desperate for AFTD is tremendously grateful The teens’ site aims to cover specific resources specific to the needs of their to the following donors, who made FTD topics in more detail at a tenth children. I knew this website would be a the new site possible: Anonymous, grade reading level. Photos, quotes, and lifeline for many kids and teens whose lives Florence V. Burden Foundation, The stories of teenagers who have parents were being affected by a disease as unique Connecticut Frontotemporal Dementia with FTD are used throughout the and complex as FTD,” Savitsky said. Foundation, Inc., Olivia Goldring site to give teenagers information that Olivia Goldring, 18 years old, lost via Riverdale Country School 2012 is both accurate and authentic that her mother to FTD in 2012. When her Walk-a-Thon for Rachel, The Allen they can apply to their own situations. mother was first diagnosed with FTD, & Lola Goldring Foundation, and A long-term goal Goldring did online research to learn Family and Friends of Jeffrey Van Son. The need for a website to help kids and about her mother’s illness. “I looked teens cope as they work through the illness things up on Google, but was always led with their families was first recognized in to medical pages which were far above 2010 by AFTD’s Task Force on Families my comprehension level. There were no with Children, a group of professionals resources that presented the information and family caregivers who focused on in a compassionate, understanding, and exploring the needs of kids, teens and relatable way. What AFTD has made with families with a parent with FTD. One the children and teens sites is all of the things of the Task Force’s primary goals was to I didn’t find elsewhere.” Goldring said. Amy Eissler is a volunteer writer for AFTD who contributed to the Kids and Teens website. The Association for Frontotemporal Degeneration n Volume XI, Issue 1: Spring 2014 9 AFTD’s 1st Volunteer Leadership Summit a Huge Success! s a rare disease organization with identified strengths to apply in their time spent collaborating. Jenny Hinsman, nationwide reach, AFTD relies on management roles. They shared strategies MidAtlantic regional coordinator said, lead volunteers to help represent and brainstormed new approaches “The leadership summit was an amazing the organization in communities to try back home in their regions. time to meet with other regional throughout the country. coordinators and to share ideas. These volunteers are part I was particularly interested in of the AFTD team and the discussion we had around play an important role in outreach to universities to advancing the mission.. grow our volunteer base.” On March 13, 2014, “I left the summit feeling very a year and a half after motivated as a leader after being launching the volunteer surrounded by a community of p r o g r a m , A F T D volunteers all there for the same sponsored its first-ever reason,” said Rachael Baffa, volunteer leadership Southwest regional coordinator. summit. Eleven regional Charlene Martin-Lillie, Midwest coordinators and key regional coordinator shared, volunteers from across “I was so lucky to be a part the country were in Connect with AFTD’s regional coordinator of the leadership summit. It attendance. Some of volunteer in your region and find out how you was fantastic to meet all of the the topics presented other regional coordinators. It for discussion included can engage to advance the mission! Go to strengthened my dedication recruiting and organizing www.theaftd.org and search on “US Regions”. to AFTD and to supporting volunteers, as well families impacted by this as managing volunteers, activities, The summit offered the onlydevastating disease.” As a result of and administrative tasks effectively. opportunity to be together in person as the afternoon, the volunteers left The volunteers learned critical new a team during the past year. Everyone in feeling part of a team making a leadership skills and techniques, and attendance expressed appreciation for the significant impact on behalf of AFTD. Giving a Hand to Our Helping Hands! by Rachael Baffa dvancing AFTD’s mission a stellar facility that took Medicaid. I “Some facilities don’t accept anyone requires the engagement wrote them several letters, and never under 65,” Mary said. “I want to of a growing number of gave up hope, even after being rejected advocate for nursing homes to be open wonderful volunteers across the United three different times,” stated Mary. to taking these much younger clients.” States. Based on individual interest, Mary also provides office support when skill and availability, AFTD works there are special projects and plans diligently to match each volunteer to represent AFTD as a community with the work that needs to be done. awareness representative at the upcoming One of our many valued volunteers is Brain Health Fair in Philadelphia. Mary Black. Mary, currently residing in Kerri Barthel, volunteer manager, Philadelphia, lost her husband, Bernie said that “Mary is always flexible (64), to FTD in 2012. She recalls that and willing to make herself available she was first introduced to AFTD to help. She is truly dedicated to as she struggled with the knowledge advancing the mission of AFTD.” that Bernie’s illness was growing progressively worse, and that keeping Mary’s experience with FTD has been him at home was becoming less and less “a soul stretching journey. Watching of an option. “I would call the AFTD it take over someone you love requires Helpline, mainly to ask questions Mary with one of her ten grandchildren reserves of courage that you didn’t about nursing home placement,” Mary know you had, but somehow, that recalled. Mary’s journey with FTD Because Mary encountered such courage will be there when you need it.” was difficult on its own, but adding resistance from the nursing homes, she Rachel Baffa, whose father is the stress of finding placement made is now volunteering in AFTD’s facility it even harder. “It took two years. I outreach program, which strives to affected with FTD, is a volunteer did finally manage to get Bernie into educate staff at facilities about FTD. writer for AFTD. 10 The Association for Frontotemporal Degeneration n Volume XI, Issue 1: Spring 2014 “With Love” Campaign Raises $50,000

FTD would like to thank all of our fundraisers, donors and matching donors for AFTD’s A making year three of “With Love” a success! Focused around Valentine’s Day, “With Love” urges those whose lives have been impacted by FTD to share their stories of enduring love. This year’s campaign featured fourteen different stories of love from many Campaign 2014 different perspectives- friends, spouses, children, grandchildren and parents. The “With Love” campaign page highlighted the story of Phyllis and Nancy, whose “With Love” once again exceeded expectations decades-long friendship was put to the ultimate test and raised over $50,000, including two generous when Phyllis was diagnosed with FTD. Nancy faced matching gifts from Beth Walter and The the challenge head-on and committed to sticking by Rainwater Charitable Foundation, bringing the her friend and making the most of their time together. grand total for all three years to over $135,000. The Association for Frontotemporal Degeneration n Volume XI, Issue 1: Spring 2014 11 The AFTD - Team

Go to “What’s New” on 3rd Annual Robert M. Hatfield the AFTD website to view the ABC news coverage Foundation, Inc. Golf Tournament of Max’s Catch-a-Thon The Robert M. Hatfield Foundation, Inc., led by Matt Hatfield, held its third annual golf tournament on November 11, 2013 in Saint Petersburg, Max’s Catch-a-Thon FL. The tournament raised $7,000 for AFTD. Max Portnoy, of Bethesda, MD, came up with a unique idea for his charity project in conjunction with his Bar Mitzvah. Max decided to turn time The Silver Lining spent playing the game he loves into an opportunity Traci Connor’s grandfather was a professor of biology to honor his beloved grandfather and raise money to and authored a book entitled The Silver Lining: The help end the disease that is taking his grandfather Benefits of Natural Disaster. He is currently diagnosed away from him. Max organized a three-hour catch- with FTD and Traci and family are trying to find the a-thon to honor his grandfather and raise money silver lining by raising funds for AFTD. Their fundraiser for AFTD. Max’s raised $1,809 to support research. grandfather is a former well respected rabbi and army chaplain, but now, due to the Aramco Houston Half Marathon effects of FTD, he Angela Kimble and Sean Cain teamed up to can no longer speak, run a half marathon in memory of their mother, has difficulty moving who died of FTD in 2011. Angela and Sean and can no longer raised nearly three times their goal of $500. play catch with Max. Over sixty people turned out for the event on March 23rd, which included raffles Max Portnoy and his “Zayde” and food donated by Join us in King of Prussia, several local business. There was even a surprise PA May 18! guest: Max’s grandfather Skyped in from his home in New York to greet all of the participants. Inspired by so many generous grassroots Max’s catch-a-thon raised over $18,000 and was fundraisers in the FTD community, the staff features on a local news website, as well on a prime of AFTD will hit the streets for the third year in time news segment on the local ABC affiliate. a row to raise funds and FTD awareness in our own community. Join us on May 18th at the King of Prussia 10 Miler and 5K. AFTD will provide a Manasquan Turkey Trot light breakfast and an opportunity to gather with other families, AFTD staff and members of the local Brother-Sister duo Eric Zuckerman and Jennifer medical community. Visit our Givezooks! page for Zuckerman Moran marked the beginning of the more information. www.theaftd.givezooks.com/ holiday season by participating in the Manasquan campaigns/aftd-and-friends-walking-the-walk-2014 Turkey Trot, a five mile race held in Monmouth Interested in putting together a team to County, NJ, in honor of their father. Their father, participate in a race in your area? AFTD can help you find a race and solicit team members! Contact a former avid runner himself, is affected by FTD. Liz at [email protected] for more information. The Zuckermans raised over $7,000 for AFTD. Prsrt. Std. U.S. Postage PAID Radnor Station Bldg. 2, Suite 320 Williamsport, PA 290 King of Prussia Road Permit #33 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. Gail Andersen Emily Levy, M.B.A. David S. Knopman, M.D. Walter A. Kukull, Ph.D. Chair, California Ohio Massachusetts Chair, Mayo Clinic, Rochester University of Washington Debbie Fenoglio Deanna Angello, M.B.A. Linda Nee, LCSW-C Mario Mendez, M.D., Ph.D. Virginia M.-Y. Lee, Ph.D. New York Maryland University of Pennsylvania Vice Chair, Colorado Chair Elect, University of Steve Bellwoar Lisa Radin California, Los Angeles Carol F. Lippa, M.D. Bryan Dalesandro Pennsylvania Nevada Drexel University Treasurer, New Jersey Bradley F. Boeve, M.D. Earl Comstock, Esq. Popkin Shenian Mayo Clinic, Rochester Irene Litvan, M.D. Washington, D.C. Pennsylvania University of California, San Diego Bonnie Shepherd Tiffany W. Chow, M.D. Recording Secretary, Francine Laden, Sc.D. John Whitmarsh, Ph.D. University of Toronto Ian R.A. Mackenzie, M.D. Utah California University of British Columbia, Massachusetts Bradford C. Dickerson, M.D. Vancouver Helen-Ann Comstock Paul Lester Harvard University M.-Marsel Mesulam, M.D. Founder, Connecticut North Carolina Dennis W. Dickson, M.D. Northwestern University Mayo Clinic, Jacksonville Bruce L. Miller, M.D. Karen Duff, Ph.D. University of California, Staff Columbia University San Francisco Bernardino Ghetti, M.D. Jill Murrell, Ph.D. Susan L-J Dickinson, M.S. Michelle Leahy Indiana University Indiana University Executive Director Business Manager Chiadi Onyike, M.D. Jill Goldman, M.S. Johns Hopkins University Sharon S. Denny, M.A. Pam McGonigle, M.A. Columbia University Program Director Development Manager Rosa Rademakers, Ph.D. Murray Grossman, M.D., Ed.D. Mayo Clinic, Jacksonville University of Pennsylvania Nadine Tatton, Ph.D. Matthew Sharp, M.S.W. Howard Rosen, M.D. Scientific Director Program Manager Edward Huey, M.D. University of California, Columbia University San Francisco Kerri Barthel, M.S.W. Elizabeth Neal Volunteer Manager Development & Marketing Asst. Michael Hutton, Ph.D. John Q. Trojanowski, M.D., Ph.D. Eli Lilly & Co. UK University of Pennsylvania

For permission to reprint articles, please contact [email protected] or call 267-514-7221. AFTD is a non-profit, 501(c)(3), charitable organization. A copy of AFTD’s official registration and financial information may be obtained from the PA Department of State by calling toll free within Pennsylvania, 1-800-732-0999. Registration does not imply endorsement.