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