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THE
ASSOCIATION FOR
FRONTOTEMPORAL
D EG EN ER ATI O N ’ S
H O P ERISING
INAUGURAL
B E N E F I T
T H U R S DAY, S E P T E M B E R 2 9 , 2 0 1 6
honor i n g DAVI D Z A S L AV President & Chief Executive Officer,
Discovery CommunicationsThe Susan Newhouse & Si Newhouse
Award of Hope Recipient
T H E P I E R R E H OT E L , N E W YO R K C I T Y
W E LCO M E PAU L A Z A H N
V I D E O CO M M I T T E D TO C H A N G E
TO G E T H E R TO N I G H T S U S A N D I C K I N S O N , A F T D E X EC U T I V E D I R EC TO R
D I N N E R
V I D E O S U S A N S U C H A N
T E L L I N G O U R S TO RY DA N I E L H E DAYA , 2 0 1 6 B E N E F I T CO - C H A I R
O L I V I A G O L D R I N G , A DVO C AT E , YO U N G A D U LT A M B A S S A D O R FO R A F T D
H O P E I S R I S I N G K AT H Y N E W H O U S E M E L E , 2 0 1 6 B E N E F I T CO - C H A I R
C A L L TO AC T I O N
P R E S E N TAT I O N O F T H E S U S A N N E W H O U S E & S I N E W H O U S E AWA R D O F H O P E
TO DAV I D Z A S L AV BY D O N A L D N E W H O U S E , 2 0 1 6 B E N E F I T CO - C H A I R
M U S I C A L P E R F O R M A N C E K E L L I O ’ H A R A
D E S S E R T B U F F E T
AFTD'S I N AU G U R A L HOPE RISING BENEFIT
Dear Friends of AFTD,
Thank you for joining us for this special evening. By being part of the first AFTD Hope Rising Benefit, you are sending a powerful message to families around the world impacted by frontotemporal degeneration (FTD): Hope is rising for a better future.
More prevalent for people under 60 than Alzheimer’s or any other form of dementia, FTD is still far too little known. It brings a progressive decline in behavior, language and/or movement. Diagnosis is still far from accurate, and options to connect and find support are limited. Too many individuals and families are left to face a devastating disease in confusion and isolation, confronting the reality that their or their loved one’s best days are behind them far too soon.
The organization I have the privilege of leading, the Association for Frontotemporal Degeneration, is the preeminent nonprofit working to improve quality of life for people affected by FTD, and to drive research to a cure.
Raising awareness is key to everything we want to achieve, and we are incredibly grateful to David Zaslav, who with Discovery Communications has championed our cause. His vision and generosity have helped AFTD to reach millions of people with vital information about this still too-little known disease.
Our event marks the second World FTD Awareness Week. Tonight you are part of a national phenomenon, joining more than 100 fundraising and awareness events across the U.S., with more than a dozen countries holding events of all kinds.
We are grateful to benefit co-chairs Donald Newhouse, Kathy Newhouse Mele and Daniel Hedaya, and to all of our event sponsors. Through their generosity, every dollar donated through this benefit will directly support AFTD’s mission. As we celebrate tonight, it is a promising time for those of us committed to ending FTD. Still: much work remains, and the real celebration should be reserved for the day when we have eradicated this disease. AFTD’s board, staff and volunteers are resolutely focused on achieving that goal, committed to our core values of knowledge, collaboration, respect, dignity and compassion. We value your partnership in this important work.
Sincerely,
Susan L-J Dickinson Executive Director AFTD
THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATIONOPENING THE GATEWAY TO HELP AND A CURE
Frontotemporal degeneration (FTD) is the most common form of dementia for people under age 60. Currently incurable and without approved treatments, FTD has profound effects on the lives of more than 50,000 Americans. The hallmark of FTD is a gradual, progressive decline in behavior, language, and/or movement. Accurate diagnosis can take years, and options to connect with peers and experts are all too rare. Anyone impacted by FTD today deserves far more than medicine can yet provide.
In the U.S. and around the world, the Association for Frontotemporal Degeneration (AFTD) is the leading nonprofit working to improve quality of life for people affected by FTD, and to drive research to a cure. With a community of donors, volunteers, advocates and professionals, AFTD works every day to advance: collaborative research; awareness; support for those directly impacted; and education for healthcare professionals, while advocating for appropriate, affordable services.
MARIO MENDEZ, M.D. , PH.D. , CHAIR UNIVERSITY OF CALIFORNIA, LOS ANGELES
IAN R. A . MACKENZIE, M.D. , CHAIR ELECT UNIVERSITY OF BRITISH COLUMBIA, VANCOUVER
BRADLEY F. BOEVE, M.D. MAYO CLINIC , ROCHESTER
BRADFORD C. DICKERSON, M.D. HARVARD UNIVERSITY
DENNIS W. DICKSON, M.D. MAYO CLINIC , JACKSONVILLE
KAREN DUFF, PH.D. COLUMBIA UNIVERSITY
BERNARDINO GHETTI , M.D. INDIANA UNIVERSITY
JILL GOLDMAN, M.S . COLUMBIA UNIVERSITY
MURRAY GROSSMAN, M.D. , ED.D. UNIVERSITY OF PENNSYLVANIA
EDWARD HUEY, M.D. COLUMBIA UNIVERSITY
MICHAEL HUTTON, PH.D. ELI LILLY & COMPANY, UK
DAVID S. KNOPMAN, M.D. MAYO CLINIC , ROCHESTER
WALTER A. KUKULL, PH.D. UNIVERSITY OF WASHINGTON
VIRGINIA M.-Y. LEE, PH.D. UNIVERSITY OF PENNSYLVANIA
CAROL F. LIPPA, M.D. DREXEL UNIVERSITY
IRENE LITVAN, M.D. UNIVERSITY OF CALIFORNIA, SAN DIEGO
M.-MARSEL MESULAM, M.D. NORTHWESTERN UNIVERSITY
BRUCE L. MILLER, M.D. UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
JILL MURRELL, PH.D. INDIANA UNIVERSITY
CHIADI ONYIKE, M.D. JOHNS HOPKINS UNIVERSITY
ROSA RADEMAKERS, PH.D. MAYO CLINIC , JACKSONVILLE
HOWARD ROSEN, M.D. UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
JOHN Q. TROJANOWSKI, M.D. , PH.D. UNIVERSITY OF PENNSYLVANIA
AFTD MEDICAL ADVISORY COUNCIL
AFTD BOARD OF DIRECTORS
GAIL ANDERSEN, CHAIRDEANNA ANGELLOSTEVE BELLWOARRICK CHILDSHELEN-ANN COMSTOCKDEBBIE FENOGLIOSTEPHEN FENOGLIOMATT HATFIELDSUSAN LADENJARY LARSEN, PH.D.PAUL LESTERKATHY MELELISA RADINPOP SHENIANBONNIE SHEPHERDBETH WALTERJOHN WHITMARSH, PH.D.
HONORING DAVID ZASLAV
As chief executive, David Zaslav sets the strategy and oversees all operations for Discovery Communications. Reaching three billion cumulative global viewers, Discovery is home to a portfolio of worldwide television networks, led by Discovery Channel, TLC, Investigation Discovery, Animal Planet, Science and Velocity, as well as U.S. joint venture network OWN: Oprah Winfrey Network, Discovery Kids in Latin America, and Eurosport, home of the 2018-2024 Olympic Games across Europe. Prior to joining Discovery, Zaslav had a distinguished career at NBCUniversal where he was instrumental in developing and launching CNBC and also played a role in the creation of MSNBC.
Frontotemporal degeneration takes so much from those whose lives it touches. Because today there are no disease-modifying treatments—and because today there is no way to cure or prevent this form of dementia—FTD can test our resolve, our sense of connection and purpose.
One thing we will never let FTD take from us is hope. The Susan Newhouse & Si Newhouse Award of Hope is being presented for the first time at tonight’s benefit.
The Newhouse family has been a leader in raising hope for all facing FTD—committing more than $10 million to support FTD research over the past year, targeting the discovery of new ways to diagnose and treat FTD. Dedicated to Susan Newhouse and her brother-in-law Si Newhouse, two individuals who have suffered from this form of dementia, the Award of Hope has been established to honor an individual or organization instrumental to improving quality of life for people with FTD, and driving research for a cure.
The award is intended as a reminder to all whose lives have been touched by FTD that no matter how difficult your challenges, you are not alone. As a community, we will fight this disease, bringing a future in which FTD can no longer alter lives or test families. Together, we will realize our common hope to #endFTD.
THE SUSAN NEWHOUSE & SI NEWHOUSE AWARD OF HOPE
FROM LEFT TO RIGHT: SI NEWHOUSE, DONALD NEWHOUSE, AND SUSAN NEWHOUSE.
Award by Tiffany & Co.
AS OF SEPTEMBER 14, 2016
This event is only possible because of people like you who have chosen to address a critical challenge facing far too many families around the world. If we can unlock treatment and a cure for FTD, it will mean a significant advance for all forms of dementia. Your generosity brings a better world closer to reality.
CARING COUPLES CIRCLE
ICON INTERIORS, INC.
BOBBY AND ARTHUR KURZWEIL
LIONSGATE
MR. AND MRS. FRANCOIS MAISONROUGE
JILLIAN AND LAWRENCE NEUBAUER
WENDY FLANAGAN AND CHRIS O’MALLEY
THE PARSONS FAMILY FOUNDATION
MARTHA AND MARK PATRICOF
PENSKE MEDIA CORPORATION
COLLEEN AND BRENDAN QUINN
ADCO ELECTRICAL CORP
DEBORAH AND STEVE BARNES
MARY AND DICK BENIOFF
MARIAN AND BOB BENNIS
CUSHMAN & WAKEFIELD
DOUGLAS ELLIMAN REAL ESTATE
SHELLEY AND STEVEN EINHORN
EMPIRE OFFICE
EUROTECH CONSTRUCTION
MINALIE CHEN AND JACKSON HSIEH
LYNN AND RALPH HUBER
ROBERT DERECTOR ASSOCIATES
JOANNA S. AND DANIEL ROSE
ANNA MARIE AND ROBERT F. SHAPIRO
BARBARALEE DIAMONSTEIN AND CARL SPIELVOGEL
EMMA AND MACKENZIE STRATHY
SYDNEY LICHT AND TOM SUMMER
NAN SWID
TENER CONSULTING SERVICES LLC
TPG ARCHITECTURE
SHIRLEY YOUNG
AWARENESS CIRCLE
AFTD BOARD MEMBERS
ELINOR LIPMAN AND BENJAMIN AUSTIN
JOAN BERANBAUM
PATRICIA K . CAREY
DR. AND MRS. JOSEPH COHEN
AARON DANIELS AND ADAM DANIELS
VALERIE AND CHARLES DIKER
CHLOE AND DUSTY GRANET
MINDY AND JON GRAY
SHARON AND PETER GROSSMAN
AGNES GUND
SUSANNE HEDAYA
MARIAN S. HEISKELL
MR. THOMAS HOFFMAN
iHEARTMEDIA
SIDNEY R. KNAFEL
CAROL H. AND ROBERT D. KRINSKY
LABFINDER.COM
PAT AND ANDY LANGER
RABBI YAMIN AND AFSANEH LEVY
MARGARET CUOMO MAIER AND
HOWARD MAIER
PATRICK McBRIEN
MHR FUND MANAGEMENT
GILLIAN AND SYLVESTER MINITER
MIXOLOGY CLOTHING COMPANY
HIROKO AND SATORU MURASE
HELEN STAMBLER NEUBERGER
PLATINUM PROPERTIES
STEPHEN ROSENBLATT
KERRI AND EYTAN SAPERSTEIN
CATHERINE SAXTON
NANCY SEAMAN AND ALAN SCHWARTZ
STEPHANIE AND JACK SEIBALD
ALLISON SELLON
PAMELA VAN ZANDT
JUDY AND JOSH WESTON
NINA WORTZEL-HOFFMAN
SCOTT ZELNICK
KATHLEEN BLUM
LINDA DEUBERT
MRS. LAURETTE FENG
LAUREN AND BARRY GOLDSTEIN
DAVID M. HRYCK
JUN AND UZAL MARTZ
KATHY McANDREW
COMMUNITY CIRCLE
BENEFIT CO-CHAIRS
DONALD NEWHOUSE
KATHY NEWHOUSE MELE
DANIEL HEDAYA
BENEFIT VICE-CHAIRS
CONDÉ NAST
DISCOVERY COMMUNICATIONS
THE DURST ORGANIZATION
SAMUEL I . NEWHOUSE FOUNDATION
SULLIVAN & CROMWELL
UBS
U.S. TRUST
HOPE STARTS WITH YOU
SUSAN AND SI ’S CIRCLE
CONDÉ NAST
DISCOVERY COMMUNICATIONS
THE DURST ORGANIZATION
PATRICIA M. AND VICTOR F. GANZI
RUPERT MURDOCH
SAMUEL I . NEWHOUSE FOUNDATION
SULLIVAN & CROMWELL
U.S. TRUST
UBS
HOPE RISING CIRCLE
NOMI AND NEAL BERGMAN
LARRY GAGOSIAN
DIANE AND BOB MIRON
JACKIE AND STEVE MIRON
J.P. MORGAN
VISION CIRCLE
CATHERINE FARLEY AND ENRIQUE CHANG
CHARTER COMMUNICATIONS
CITI PRIVATE BANK
CAROL SUTTON LEWIS AND WILLIAM M. LEWIS, JR.
McDERMOTT WILL & EMERY LLP
MSG NETWORKS
NEPC, LLC
SUPPORTER CIRCLE
SAMANTHA AND
DAVID GOLDRING
THE HEDAYA FAMILY
MICHTER’S DISTILLERY, LLC
MARTIN PACKOUZ/
GOLDMAN, SACHS & CO.
UNIVISION
COMMUNICATIONS INC.
MAGDA AND EDWARD BLEIER/ DANA FOUNDATION
CBRE
DAVID GEFFEN FOUNDATION
FRIED, FRANK, HARRIS, SHRIVER & JACOBSON LLP
ARLYN AND EDWARD L. GARDNER
GENSLER
IMAX CORPORATION
ALFRED G. AND DEBORAH JACKSON
LANE OFFICE
ELAINE AND KEN LANGONE
GERRY LENFEST
DALE W. AND SANDRA LUTZ
PATRICIA MOSER McCARTHY & LILLIAN RUTH MOSER
TURNER INTERIORS
CARYN AND JEFF ZUCKER
PATRON CIRCLE
AFTD is sincerely grateful for the support and leadership on display this evening. You have made a profound difference in our work to #endFTD.
A 30-year news veteran and nine time Emmy Award winning journalist, Paula Zahn is the Executive Producer and host of On The Case With Paula Zahn on Investigation Discovery. Before ID, Paula anchored for CNN, hosting American Morning and the prime time show Paula Zahn Now. Prior to CNN, Zahn joined Fox News after spending ten years at CBS News, where she co-hosted CBS This Morning and anchored the CBS Evening News Saturday Edition. Earlier, Zahn served as co-anchor of ABC’s World News This Morning and anchored the news segments of Good Morning America.
Throughout her career, Zahn has interviewed dignitaries and newsmakers, including former U.S. Presidents Bill Clinton, George Bush, Jimmy Carter and Gerald Ford, Cuban President Fidel Castro, former Russian President Mikhail Gorbachev, first lady Betty Ford, civil rights leader Stokely Carmichael, and human rights activist Winnie Mandela. Her career long reportage has also been honored with the National Commission of Working Women Broadcasting Award and an AWRT Award for reporting on gender bias in education.
Zahn is also an accomplished cellist who attended college on a cello scholarship and has performed with orchestras in Carnegie Hall, Kennedy Center, Russia and South Korea. She also hosts WNET’S NYC-ARTS, a weekly look at the Arts and Culture in Tri-State area.
HOST PAULA ZAHN
Kelli O’Hara has unequivocally established herself as one of Broadway’s great leading ladies. Her portrayal of Anna Leonowens in the critically acclaimed revival of The King and I garnered her the 2015 Tony Award for Best Leading Actress in a Musical, along with Drama League and Outer Critics nominations. Recently, Ms. O’Hara starred as Mrs. Darling in NBC’s live telecast of “Peter Pan” alongside Allison Williams and Christian Borle and made her Metropolitan Opera debut in The Merry Widow with Renee Fleming. Other Broadway credits include The Bridges of Madison County (Tony, Drama Desk, Drama League, OCC nominations), Nice Work If You Can Get It (Tony, Drama Desk, Drama League, OCC nominations), South Pacific (Tony, Drama Desk, OCC nominations), Pajama Game (Tony, Drama Desk, OCC nominations), The Light in the Piazza (Tony & Drama Desk nominations), Sweet Smell of Success, Follies, Dracula, and Jekyll & Hyde. Regional/Off Broadway credits include Far From Heaven (Playwrights Horizons and WTF), King Lear (Public Theater), Bells Are Ringing (City Center Encores), Sunday in the Park with George (Reprise), and My Life With Albertine (Playwright’s Horizons). Concerts span from Carnegie Hall to Capitol Hill. Film and television credits include Masters of Sex, Sex & the City 2, Martin Scorsese’s The Key to Reserva, Blue Bloods, Alexander Hamilton, N3mbers, and the animated series Car Talk. She is a frequent performer on PBS’s live telecasts and the Kennedy Center Honors. Her solo albums, Always and Wonder in the World are available on Ghostlight Records.
MUSICAL PERFORMANCE KELLI O’HARA
AFTD PROGRAM HIGHLIGHTS
AFTD HISTORY
AFTD raises awareness. Discovery Communications and AFTD collaborated to develop a PSA on FTD. Discovery broadcast it extensively in August 2016, showing the ad more than 200 times and bringing FTD awareness to more than 10 million viewers!
This week is the second ever World FTD Awareness Week, marked nationwide and by more than a dozen countries across the world. This past Sunday, with support from a generous donor, an FTD awareness ad ran in the Sunday New York Times, and a second one will run on October 2. Both were designed by AFTD volunteer Jody Zorn, who lost her father to this disease.
AFTD drives cutting-edge FTD research. With support and leadership from the Newhouse family, AFTD has created two major multi-year research initiatives. We launched a 5-year, $5 million quest for FTD Biomarkers, necessary for accurate diagnosis, tracking disease progression, and developing accurate outcome measures for clinical trials. We have also launched a ten-year program to stimulate clinical trials. A $5 million Newhouse investment has been matched by $5 million from the Estée Lauder family, to fund a powerful joint venture between AFTD and The Alzheimer’s Drug Discovery Foundation, our decade-long partner in FTD drug discovery.
AFTD was founded in 2002 by Helen-Ann Comstock. The organization is the product of her experience as an FTD caregiver for her husband, and collaboration with scientists, physicians and other caregivers, who echoed the need for increased attention to the devastation caused by FTD.
One of AFTD’s first actions to advance research was to establish a Medical Advisory Council comprised of leading researchers, clinicians and health care professionals from across the U.S. and Canada. Together, they created a culture of collaboration and excellence that formed a solid foundation for the organization. Over the past 14 years, AFTD has grown from an all-volunteer organization funded by a $1,000 donation to a national nonprofit with a core budget of more than $3 million and a full-time staff of 16. In Europe and countries across the world, volunteers are increasingly working in their own associations using the model that Ms. Comstock and AFTD pioneered.
Even as AFTD has grown, dedicated volunteers are the core of our work. These include people diagnosed and many caregivers who have themselves seen FTD impact a close family member or friend. By transforming an experience of profound loss into a commitment to make a difference, volunteers bring hope to our community.
Today, volunteers drive AFTD’s Board and Medical Advisory Council. They lead support groups that enable AFTD to have local impact in communities across the country. And they lead the charge to spread awareness. Our event’s three co-chairs are themselves volunteers who have devoted their resources, talents and energy to ending this disease. Thank you for joining us.
AFTD builds community. A central repository where those impacted by FTD can record their personal experience is crucial to advancing our understanding of FTD. After intensive planning and design work, our FTD Disorders Registry is now ready for launch! This secure database will collect information from people diagnosed with any FTD disorder, and from their caregivers and family members. Our Registry will provide a research-ready patient community to accelerate clinical trials targeting FTD, and assist with the design of patient-centered studies and care practices.
AFTD gives support. Last year, AFTD’s HelpLine responded to 2,200 calls and emails. We provided 169 Comstock Grants for caregiver respite and travel to conferences. AFTD also began to train and affiliate support group leaders from across the US. To date, 55 affiliated leaders—representing approximately half of the FTD-specific support groups in the country—have completed the training. Our program has already been a catalyst for the creation of 17 new support groups.
AFTD brings hope. AFTD was founded in 2002, envisioning a world where FTD is understood, effectively diagnosed, treated, cured and ultimately prevented. By joining us tonight, you bring hope for a day when an effective, comprehensive response—and an end to this disease—is a reality. Together, we can #endFTD.
THINK IT’S ALZHEIMER’S? THINK AGAIN.
Still far too little known or understood, frontotemporal degeneration (FTD) is the most common form of dementia for people under 60. It represents 10 to 20 percent of all dementias.
Many doctors are still unfamiliar with this disease, and as a result FTD is often initially misdiagnosed as Alzheimer’s, as a psychiatric condition or as Parkinson’s. On average it takes 3.6 years to get an accurate diagnosis.
FTD is an umbrella term for a group of progressive diseases that affect the same brain regions. These include behavior variant FTD, primary progressive aphasia (PPA), corticobasal degeneration (CBD), progressive supranuclear palsy, and FTD/ALS.
FTD is not a memory disorder. It steals personality, language, judgment and emotions—the very things that make us who we are. FTD strikes people in the prime of life, gradually eroding their personality, their ability to speak, make sound decisions, control their movements, behave within social norms, and relate to those they love.
Because it usually develops during middle age—and because there is so often a delay in diagnosis—the damage that FTD does to family relationships, finances and even to the health of caregivers themselves can be devastating.
Currently there are no approved treatments, and most health care providers lack knowledge of appropriate care for a person with FTD. The average life expectancy is 7-13 years after the start of symptoms.
FTD can be extremely isolating, for the person diagnosed and for those who love them. But AFTD is responding to these challenges—and there are many reasons for hope, including rapidly increasing awareness, advocacy and research.
and its partners are honored to support
AFTD’s search for a cure for FTD
and its efforts to improve the lives of those affected by it.
We congratulate David Zaslav on his receipt of
The Susan Newhouse & Si Newhouse Award of Hope.
WORLD FTD AWARENESS WEEK
September 25 – October 2
Connect with the FTD community around
the world via tonight’s Twitter wall!
Sample tweet: I took part in AFTD's Hope Rising
benefit. Hundreds joined together tonight to help
#endFTD #HopeRising2016
AFTD VOLUNTEERS AND DONORS
CAKE BOSS/BUDDY VALASTRO
DISCOVERY COMMUNICATIONS/ERIN CALHOUN, TC CONWAY, ARIELLE GELLER, MICHAEL NANNETTI
GEORGETOWN CUPCAKES
GERSH/TREVOR KAPLAN-NEWMAN, ERICA TUCHMAN, RACHEL ZEIDMAN
OLIVIA GOLDRING
THE HEDAYA FAMILY
HEATHER MILLER
THE NEWHOUSE FAMILY
KELLI O’HARA
JOHANNA ROEBAS
SUSAN SUCHAN
ERIKO SOTO AND FRED TAFFER
THINKFILM, INC.
VOGUE/JENNIFER DONNELLY, EADDY KIERNAN
ANNA WINTOUR
WORLD FTD UNITED AND AWARENESS ADVOCATES WORLDWIDE
PAULA ZAHN
DAVID ZASLAV
JODY ZORN
THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION WISHES TO THANK THE
FOLLOWING FOR THEIR TIME AND TALENT IN MAKING TONIGHT EXTRAORDINARY:
BENEFIT TEAM
THE BERMAN GROUP/SARAH BERMAN
FRANK PR/CLAREANNE DARRAGH, ELEINA ELACHKAR, LINA PLATH
JERRY HARMYK
KIRKPATRICK AND KINSLOW PRODUCTIONS/RUSS KIRKPATRICK
THE PIERRE HOTEL/ANDREW HOITE, BILL SPINNER
JAMES SALZANO
BENEFIT MANAGEMENT
EVENT ASSOCIATES/DEBBIE FIFE, JULIANNA HARDER