ANNUAL REPORT 2014
ABOUT THE MARFAN FOUNDATION
Marfan syndrome is a life-threatening genetic disorder of the body's connective tissue. It affects the heart
and blood vessels, the bones, and the eyes. Knowing the signs is the key to early and accurate diagnosis and
life-saving treatment.
The Marfan Foundation creates a brighter future for everyone
affected by Marfan syndrome and related disorders.
We work tirelessly to advance
research, serve as a resource for
families and healthcare providers,
and raise public awareness. We
pursue the most innovative
research and make sure that it
receives proper funding.
We create an informed public
and educated patient community
to increase early diagnosis and
ensure life-saving treatment.
We provide relentless support
to families, caregivers, and
healthcare providers.
We will not rest until we have
achieved victory—a world in
which everyone with Marfan
syndrome or a related disorder
receives a proper diagnosis,
gets the necessary treatment,
and lives a long and full life.
Visit Marfan.org to learn more.
DEAR FRIENDS,
I am proud to share with you our 2014 annual report, which showcases
our commitment to creating a brighter future for everyone living with
Marfan syndrome and related disorders.
Our fight for victory over these conditions has never been stronger.
This year, we expanded our impact in every part of our mission through
new programs and initiatives. We broadened the base of individuals
and families we serve by piloting a Spanish-language initiative at our
annual family conference in Los Angeles, helping those in the increasing Hispanic population overcome the language barrier to more easily
acquire the life-saving information they need. We began to address
geographic barriers as well by holding the first of our regional education symposia in Atlanta. These programs will continue to grow, along
with our core programs of support and education, as we work diligently
to provide support and information to all who need us.
Our relentless pursuit of medical advances is evidenced through our
increasingly diverse research agenda. We continue to support the
science that will extend the lives of those with Marfan syndrome and
related disorders. We also are deeply committed to supporting projects
that enhance the quality of life for affected people, thus our renewed
emphasis on work in non-cardiac areas and on pain issues. And, our
new Early Investigator Grants for young scientists represents our
investment in the future of Marfan research. We won’t stop until we’ve
achieved victory.
The Marfan syndrome and related disorders community has flourished
this year. We’ve seen this first-hand at our Walks for Victory, at our
galas, at our annual family conference, at the local events that our
chapters and local groups hold coast to coast. We hear their stories of
triumph—about overcoming medical challenges, connecting with new
Marfan friends, getting access to medical experts. Their joys are our
joys.
However, tragedies still exist and we feel the pain of those, too. We
know that there are still people who are undiagnosed, not getting the
care they need, feeling isolated and alone—this drives us every day.
Families are at the heart of all we do and we are committed to creating
a brighter future for everyone in our community.
As part of this strong community, I thank you for your commitment to
our fight for victory over Marfan syndrome and related disorders.
Raymond Chevallier
Chair
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RESEARCH
We tirelessly advance the
research for treatments that
save lives and dramatically
enhance the quality of life for
affected people. Through our
research grant program, we’ve
strengthened a growing community of expert researchers
committed to victory over Marfan
syndrome and related disorders.
We push government to fund
the research that will improve
and save lives. We facilitate the
sharing of knowledge about
Marfan syndrome and related
disorders through conferences,
symposia, and partnerships with
governmental agencies and
$746,108
Awarded in
research grants,
funding
15 studies
48 Grant
proposals received—
a record number
other health organizations.
We continue to move research
forward for both Marfan syndrome
and related disorders because
advances in fighting Marfan
syndrome help us take steps
toward victory over fighting
related disorders—and vice versa.
HIGHLIGHTS
This year, we continued to the next
phase of our five-year research
expansion plan, Discovering
Drug Therapies for Longer and
Healthier Lives. Our goals for
this plan are to accelerate the
number of drug therapies in
development with the potential
to eliminate the life-threatening
aspects of Marfan syndrome
and provide treatments for noncardiac issues.
We funded three investigators as
part of our new Early Investigator
Grant Program, which provides
$75,000 grant awards for
researchers beginning their
independent career who study
any or all disciplines related to
Marfan syndrome and related
disorders.
We also demonstrated an
increased commitment to
research in the non-cardiac and
quality of life fields. We highlighted our interest in supporting
research in these understudied
areas in the request for proposals
for all our grant mechanisms.
Finally, we proposed a plan to
develop and pilot a standardized
electronic clinical intake form for
medical information as part of
our medical and patient registry
discovery initiative. This will allow
us to build the baseline natural
history evidence required for
drug discovery. Additionally, it
will allow us to formally network
our clinics and promote greater
interaction.
Pictured above, from left: Venkateswaran Subramanian, PhD, University of Kentucky Research Foundation; Chen Yan, PhD,
University of Rochester; and Sarah J. Parker, PhD, Johns Hopkins University
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1 5
out
of
14%
Chest bone
repair
Nearly 20% of patients said they, or a family member, had
operations that were likely due to Marfan syndrome before they
were actually diagnosed with the disorder!
21%
Aortic
Dissection
22%
Bone Issues
(shoulders, legs, knees, joints)
27%
24%
Tendon, ligament,
joint problems
Back issues
*Data based on the “Know the Signs: Marfan Syndrome and Related Disorders” survey conducted by The Marfan Foundation through SurveyMonkey. The survey was conducted between 7/28/13 and 8/18/13
with 1277 responses. Designed by Kyle Lord.
EDUCATION AND AWARENESS
We always have the latest and
most accurate information, and
we educate everyone—from
patients and families to medical
professionals and the general
public—about Marfan syndrome
and related disorders.
We foster a better informed
medical community through
the medical exhibits we attend,
hospitals we visit, and coordinated care clinics that we help
to facilitate. Our mail and email
outreach keeps people up-to-date
with the latest in care, treatment,
research, and opportunities to
help. Our website is a great
resource for our entire community;
it’s often the first place newly
diagnosed families come to find
answers and support. Our farreaching media campaign spreads
our message globally and saves
the lives of those at risk.
HIGHLIGHTS
In addition to a research-focused
article in the New York Times, we
created more media coverage
during Marfan Awareness Month,
ranging from a segment on
Doctor Radio on Sirius XM to
many articles in local newspapers.
As part of our Spanish language
initiative, we generated coverage
featuring our Spanish-speaking
medical expert and Spanishspeaking members of our community on Univision and CNN en
Español, as well as many print
and online outlets.
We boosted traffic to our website
through extensive social media
and our newly launched Know the
Signs and Victory Is campaigns.
We asked our community to post
pictures with our Victory Is signs
and conducted a Know the Signs
survey in the summer to help
gain information from our community. The survey results were
shared widely online and in
medical publications.
We provided medical professional
education at Winthrop University
Hospital (NY), Cincinnati Children’s
Hospital, and CW Post/Long
Island University and exhibited at
medical conferences for genetic
counselors, cardiologists, pediatricians, emergency physicians,
and school nurses.
Finally, we organized the first
nationally-sponsored regional
education symposium and
luncheon for patients and medical
professionals in Atlanta.
SUPPORT SERVICES
We provide a supportive
community for everyone living
with Marfan syndrome and
related disorders. Individuals,
family members, and healthcare
providers can access information
about Marfan syndrome and
related disorders on our website,
over the phone, and via email.
Special resources are available
for children, teens, parents,
teachers, nurses, and other
specialized groups and we
extended our reach through
online support groups and our
160 inquiries come in to
our help center each
month
62% concern ongoing
treatment
38% are questions
about diagnosis
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own online community. People
who are in need of life-saving
information, guidance in dealing
with schools and doctors, or
just a shoulder to cry on can
contact our help center, staffed
by a licensed social worker and
a registered nurse, for customized
assistance.
HIGHLIGHTS
We continued our efforts to
strengthen our clinic network
and cultivate relationships with
healthcare providers to improve
access to quality care. This year,
we added two new Marfan
syndrome and related disorder
clinics—at Children’s Hospital
Colorado and Rutgers Robert
Wood Johnson Aortic Center (NJ)
—to our clinic directory, bringing
the nationwide total to 42.
New educational materials were
created, including Kids Corner,
an interactive online resource
for children ages 5–12, on our
website.
Participation in our phone support groups—for parents, unaffected family members, the 50+
community and more—soared
this year. We also saw increased
sharing in the 120 support
groups in Connect, our online
community.
We continue to assist more and
more people through our help
center. The questions we receive
are diverse and complex, and
we are always poised to provide
people with the information
they need on diagnosis and
management of their condition,
and help them address their
fears and concerns when they
are facing surgery and other
health challenges.
ANNUAL FAMILY CONFERENCE
For close to three decades,
our community has gathered
at our annual family conference.
During this four-day event,
patients and families make connections and have conversations
that literally save and improve
their lives. Doctors offer superb
clinical services free-of-charge
during a full day of scheduled
appointments and there are
educational sessions, medical
workshops, and support groups
led by the world’s foremost
experts that help patients of
every age and families address
their pressing questions. Scientists
fly in from around the globe to
present their research and discuss
implications with patients and
peers alike. Patients and families
travel hundreds and even thousands of miles to join this annual
event to gain life-saving information and make life-long friends.
HIGHLIGHTS
Our 29th annual family conference,
co-sponsored by Cedars-Sinai
Medical Center, was a great
success, with more than 500
members of our Marfan syndrome
and related disorders community
coming together for a weekend
of information and support,
laughter and tears, advocacy
and empowerment.
Members of the Foundation’s
Professional Advisory Board,
who are the country’s leading
experts on Marfan syndrome
and related disorders, travelled
from all parts of the U.S. to
participate in the conference
as presenters and workshop
leaders and we were able
to help so many individuals
and families take giant steps
forward in their medical journey.
speaking population in the U.S.
and issues affecting their access
to healthcare, we launched a
multi-year initiative and piloted
our first ever Spanish-language
program at the conference. We
provided Spanish translation at
the free patient health assessments, for the general session,
and for the awards and farewell
luncheons. Additionally, we
developed a special workshop
track and six separate sessions
in Spanish.
504 Conference Attendees,
including:
21 Young Adults
59 Teens
73 Kids
Following last year’s needs
assessment of the Spanish-
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COMMUNITY
Our active volunteer network,
with more than 100 chapters,
community groups, and support
contacts from coast-to-coast,
organizes support for families
who are dealing with Marfan
syndrome and related disorders
and bands together to raise
money and awareness in local
communities. These groups,
along with individual supporters
throughout the country, carry
out our mission in their local
area by providing educational
activities for the public, conducting outreach to doctors and
8 Chapters
50 Community groups
48 Community Support
99 Events
6
hospitals, and bringing life-saving
information to those who can
make a difference. They also
conduct fundraising activities
that contribute important funds
in support of our mission.
HIGHLIGHTS
We successfully launched our
national Walk for Victory and
Team Victory programs to more
effectively advance our mission
at the grassroots level.
A sense of community among
our constituents has never been
stronger as we held four walk
events around the
country in Phoenix,
Dallas, Boston, and
on Long Island. Our
members, along with
their family and friends—
contacts
a total of 350 walkers—
came out in full force to
raise nearly $100,000. In
addition, more than 50
people laced up their sneakers
and participated in runs and
biking events on behalf of Team
Victory, raising nearly $150,000.
Our eight chapters and 50
community groups stepped up
to conduct fundraising and
awareness events. They implemented tried and true strategies
and used every opportunity to
advance our mission and raise
extensive awareness about
Marfan syndrome and related
disorders in cities, small towns,
and rural areas throughout the
country. In total, 86 awareness
and/or education activities
were sponsored in schools,
medical offices, and places of
business.
The dedication of the Marfan
syndrome and related disorders
community demonstrates that
these volunteers are truly the
heart of our Foundation.
OUR GENEROUS DONORS
The Marfan Foundation extends our sincerest gratitude to all those
who contributed financially during our 2014 fiscal year. We list here
those who contributed amounts of $1,000 or more from July 1, 2013,
through June 30, 2014.
Platinum Circle ($1,000,000 and above)
Bloomberg Philanthropies
Silver Circle ($250,000–$999,999)
Vital Projects Fund, Inc.
Bronze Circle ($100,000–$249,999)
Centene Corporation
Nick & Whiteley Wheeler
Benefactor ($50,000–$99,999)
Mr. & Mrs. Benjamin Carpenter
CBRE, Inc.
Gary & Mary Kauffman
Ms. Ann Reinking
Team Cassie Fundraiser/
Alix McLean Jennings
Patron ($25,000–$49,999)
Allen & Company, Inc.
American Heart Association
Burlington Coat Factory
Canadian Marfan Association
The Chu and Chan Foundation
Cushman & Wakefield, Inc.
Randy & Susan Falco
Frank J. Antun Foundation
Fundraiser/Scott Griebel
JAFGO Golf Outing/
Glenn Stidham & Chris Sears
Macy’s and Bloomingdale’s
Maquet Cardiovascular, LLC
NYU Langone Medical Center
Ross Stores
The Sholton Foundation
Mr. Jon Tullis
Univision Communications Inc.
VF Sportswear
Walk for Victory–Long Island/
Kramer Family
Sponsor ($10,000–$24,999)
American Legion Child Welfare Foundation
Scott & Amy Avitabile
Ms. Irene Bishop
Mr. & Mrs. Jerome Brotherton
Century 21 Associates Foundation
Conger Family Foundation
Cooking with Heart Fundraiser/
Amber Harbison
Patricia McCabe Estrada &
Miguel Estrada
Evening with Heart Fundraiser/
Alyssa Aiello & Diane Van Horn
General Atlantic Service Co. LLC
Robin & Scott Gottlieb
GQ Magazine
Heart of Iowa Chapter of
The Marfan Foundation
Intex Solutions, Inc.
Alix McLean Jennings & Ezra Jennings
Bruce & Carol Klein
KPMG, LLP
Mr. & Mrs. Allan Larson
The Levy Group
LF USA
Lord & Taylor
Merck & Co., Inc.
Mid-Atlantic Chapter of
The Marfan Foundation
Karen Murray & Harry Steinmetz
Neuco, Inc.
NewYork-Presbyterian-Weill Cornell
Medical College
Randa Foundation
Mrs. Edmond Safra
Mrs. Adele Shapiro
Mr. Stephen Siegel
Southpoint Capital Advisors
Tarix Pharmaceuticals Ltd.
Phyllis R. Tirmenstein, Roland Quest
Memorial Fund
VF Foundation
Vornado Realty Trust
Estate of Ms. Wendy Weiss
Supporter ($5,000–$9,999)
Dr. & Mrs. Douglas Aach
Barnes-Jewish Hospital
Belk, Inc.
Dr. Charles & Mrs. Roelina Berst
Birthday Fundraiser/Ellen England
Bloomberg Children’s Center
The Bon-Ton Stores, Inc.
Cambrison Trust
Casino Night/Michele Cripps
Mr. Anthony Castellanos &
Dr. Josephine Grima
Charles & Seryl Kushner Family
Foundation
Mr. & Mrs. Raymond Chevallier
Colliers International
Craig Effron & Co.
Geoff Dickey & Joan Scott
Patrick & Anne Dooley
Emerson
Express Scripts
Five Strides for Sarah/Rachel Epperson
Flagler County Education Foundation
Mr. & Mrs. Charles Galli
Mr. & Mrs. David B. Geslak
Mr. Scott & Dr. Kristen Griebel
Hollander Sleep Products
Mr. & Mrs. Bill Koman
Dr. & Mrs. Yamil Kouri
Adam & Amy Leibner
Mr. Edward Lenhart
Jerry & Judith Lerman
Susan & Fred Levine/MSA Models
March of Dimes Foundation
Massachusetts Chapter of
The Marfan Foundation
Harold & Ellen McElhinny
McLean Family Foundation
Bruce & Lynne Michelich
Kathleen Mimnagh, MD &
J. F. Cevallos-Candau, PhD
Mrs. Barbara Neustadt
Northern Illinois Chapter of
The Marfan Foundation
Plaza Construction
PricewaterhouseCoopers LLP
R.P. Lumber & Prudential One Realty
Centre
Peter & Elizabeth Roos
Ron & Pam Rubin
Sansone Group
Schenker Family Foundation
St. Jude Medical Foundation
Steven A. and Alexandra M. Cohen
Foundation
Team Victory–Long Beach Marathon/
Amanda Lenhart
Terumo Cardiovascular Systems
TJX Companies, Inc.
Derik & Beth Utz
Walk for Victory–Long Island/
Daniel Keyes
Mr. Richard Wood
Mr. & Mrs. Robert C. Wright
Partner ($1,000–$4,999)
ABM Janitorial Services–Northeast Inc.
Mr. Richard Adamski
Alberici Enterprises
Mr. Philip Alderson
Mr. John Amari
Amiee Lynn, Inc.
Mr. Clark Amos
Dr. & Mrs. David Archer
Mr. Chistopher Badum
Baker Street Trust
Mr. Russell Bancroft
Mr. Kevin T. Barnett
Mr. Kenneth & Dr. Cathleen Bateman
Mr. & Mrs. Michael W. Baumgartner
Mr. Michael Beardlslee
Birthday Fundraiser/Brooke Pulliam
Blake Dance Academy/Amy Blake
BLM Electrical Corp.
Mr. Parker Block
Bloomingdale’s
Blossom Natural Health and Wellness LLC
Jerry Bluestein & Regine Wood Bluestein
Mr. Michael Bogart
Peter & Diana Boodell
Mr. Paul Boudreau
Mr. Bernard Brautigan
Dr. & Mrs. Alan Braverman
Dr. Tracy Breen
Lisa & Gregg Bresner
Brookfield Properties
Adam & Shari Brooks
Mr. & Mrs. Thomas Brown
Mr. Roy Burgess
Mr. Michael Burks
Ms. Catheran Burnett
7
Danielle & Roger Burrus
Peter Byers, MD
Ms. Madelyn Calabrese
Ms. Livia Cangemi
Mr. Andrew Capaccio
Glenn & Stacy Carr
Mr. & Mrs. Bill Carstens
Mr. Ben Carter
Karen Castellano & Jerry Newirth
Paul & Dorothy Cayo
Ms. Kathryn Ceglarski
Mr. Alex Charleston
Charmer Sunbelt Group
Mr. & Mrs. Paul R. Charron
Ms. Ellen Chesler
CI-AMA Fundraiser
Dr. & Mrs. Jim Clanahan
Mr. Fred Clark & Ms. Cindy Amdur
Mr. Lawrence Clark
Mr. Brian Clevinger
Mr. Richard Coats
Mr. & Mrs. Jeffrey Cokin
Ms. Monika Colmignoli
Ms. Roberta Confino
William & Nancy Conger
Heidi Connolly, MD
Mr. Michael Day
Ms. Sarah Deckey
Bryan & Pamela Deering
Deloitte LLP
Mr. Conor Denihan
Mr. Daniel Denihan
Destination XL Group, Inc.
Drs. Richard & Corinne Devereux
Mr. & Mrs. Peter Diamond
Ms. Pat Diamond
The Doneger Group
John & Yvette Dubinsky
Jonathan & Wendy Dulman
E. A. Moos Foundation
E.S. Originals
Eastdil Secured
Mr. & Mrs. Cory Eaves
Edward & Elisabeth Wolfe Foundation
John Elefteriades, MD
Bruce & Ellen England
Esquel Group
Ms. Anne Essner
Etsy Jewelry Fundraiser/Tonya Archer
EvensonBest
Mr. Victoria Falcone
Ms. Eileen Farbman
Mr. Jay Farbstein
Ms. Joelle Farrell
Mr. Warren Feder
Fidelity Charitable Gifts
Lindsay & Robert Forness
Dennis & Regina Fortino
Four Seasons Spa & Pool Services
Fownes Brothers & Co.
Mr. & Mrs. Eric Frank
Mr. Zachary Freeman
Walter & Leona Friedrichs
Mr. Kevin Furlong
Robert & Lauren Gellert
GeneDx
Mr. Jeffrey Gennette
Rocco & Judy Gibaldi
8
Mr. LaRue R. Gibson, Jr.
Mark & Emily Glasberg
Global Export Marketing Co., Ltd
Mr. Stephen Gold
Ms. Dana Graebe
Marc & Liz Greenberg
Mr. Stephan Gross
Guarantee Electrical Company
Mr. & Mrs. Aaron Gunn
H Partners Management
Ms. Bernadine Hagnauer
Ms. Judith Hahn
Mr. Thomas Hardardt
Mrs. Rita Harris
Mr. Chris Heaney
Heart & Sole Fundraiser/Dominga Noe
Heart of Iowa Chapter
The Herb Block Foundation
Mr. Howard Herling
Ken & Lucy Hicks
Mrs. Anne Hinds
Hinshaw & Culbertson LLP
Mr. David Hollo
Mr. & Mrs. Richard Hughes
Mr. & Mrs. David F. Hull
Mr. & Mrs. Harold Hyman
Mr. Christopher Ihde
Mr. Barry Ilberman
Iona College
J Morris Group LLC
Ms. Cheryl Januska
Johns Hopkins University
Ms. Dawn Johnson
Mr. Steve Jones
Ms. Melissa Joy
Mr. David Kamo
Ms. Jessica Kanfer
Mr. Jeffrey Kaplan & Ms. Debra Malbin
Ms. Judith Kaplan
Ms. Caryn Kauffman
Adam & Kate Kauffman
Mr. Josh King
Ms. Blythe Kinsler
Kipling
Mr. & Mrs. Leonard S. Klein
Mr. John Klobnak
Seth & Deena Kornblau
Mr. James Kraus
Ms. Carolyn Kremins
Ms. Kate Kubit
Ms. Lyz Kurnitz-Thurlow &
Mr. John Thurlow
Mr. Todd & Dr. Heidi Law
Mr. Laurence Leeds
Adam & Amy Lehrhoff
Jonathan & Mimi Leibner
Mr. Ronald Leidenfrost
Ms. Jackie Lenhart
Jonathan & Barbara Lerman
Carolyn & James Levering
Susan & Grace Li
David Liang, MD
Liberty Health System
Marc & Jodi Lichtenstein
David & Donna Litvinsky
Brian & Jennifer Lynch
Jean MacLeay & J.D. Oliver
Richard & Susan Madris
Mr. & Mrs. Joshua Makanoff
Mr. Greg Malatestinic
Marfanforenigen-Norway
Marianne & Albert Figen Foundation
David & Sheila McLean
Ms. Wendy McMonigle
Medtronic Endovascular
Lee & Ellen Meiner
Mercy Health
Mr. Paul Metcalf
Ms. Victoria Meyer
Ms. Betsy Michel
Dr. John Middelkamp
MIdwest Emergency Medical Services
Ms. Allyson Miller
Mr. Ira Millman
Milo Kleinberg Design Associates
Missouri Baptist Medical Center
Missouri Baptist Medical Center, Cardiac,
Thoracic, & Vascular Surgery
Mr. Randall Mize
Wendy L. Molaska, MD &
Mr. Keith McClelland
Mrs. Dorothy Moore
E.G. & Kristin Morse
Mr. & Mrs. Joseph Moyer
Mr. Brian Nalls & Ms. Cabell Lemmond
Paul & Molly Neustadt
Jon & Julie Neustadt
Bill & Mary Neustadt
Ms. Bebe Neuwirth
Mr. & Mrs. James Newton
David Noe & Stephanie Cooper-Noe
Northern California Chapter of
The Marfan Foundation
Northern California Ford F100 Elite
Northern Illinois Chapter Walk/
Grace Friend
Northern Illinois Chapter Walk/
Lisa Kuehn
Joseph & Carole Nowak
Mr. & Mrs. Kenneth Ochs
James & Karen O’Keefe
Mr. Leon Olivier
Orlando Magic Fundraiser
Yogesh Patel, MD
Mr. & Mrs. Richard C. Paul
Mr. & Mrs. Norman Pearlstine
Richard Pendleton & Sage Wheeler
Glenn & Ayelet Pollner
Mr. John Pomerantz
Portland Skyliners Tall Club
Reed E. Pyeritz, MD
Quilt Fundraiser/Kathy Magee
Raj Manufacturing
Mr. Ken Rapp
Steve & Rosalinda Rayman
Mr. John Reckner
Mr. John Reilly
The Retina Institute
Review Foundation
Mr. & Mrs. Todd Richards
Mr. & Mrs. Jim Richards
Dr. & Mrs. Douglas Richter
Robert O’Brien Family Foundation
Mr. & Mrs. Keith Robertson
Dr. Paul Robiolio & Ms. Aixa Martinez
Hon. & Mrs. Alan A. Rockoff
Mary J. Roman, MD
Mr. Jon Rosenstengel
Mr. & Mrs. Frederick Rothe
Run for Izzo/Mindy Izzo
Mr. Peter Sachse
Joseph and Denise Saggio
Salesforce.com Foundation
Washington University School of
Medicine, Department of Vascular
Surgery
Terry Santora
Ms. Christine Sarkisian
Mr. William Sater
Paul & Alison Savage
Paul & Kathryn Scarborough
Ms. Meta Smith & Mr. Sol Schwartz
Mr. Joel Schwartz
Mr. & Mrs. Terence Seery
Mr. Oscar Segurado-Coll
Dr. & Mrs. Nicholas Sellas
Mr. & Mrs. William Selvitelle
Andrew & Lesley Serenyi
Shamberg, Johnson & Bergman
Foundation
Nedal Shami
Angela Sharkey, MD
Mr. Philip Sharkey
Mr. & Mrs. Andrew Shaw
Shevell Group
James Sidorchuk & Susan Toporowski
Mr. Brian Siegel
Randi Siegel
SJP Properties
SML USA
Mr. Eric Sobel
Ivan and Frema Sobel
Mr. & Mrs. Howard Socol
Barry & Linda Sommers
Ms. Elise Sinay Spilker
Mr. & Mrs. John Spillman
Mr. Steven Spolansky
Dr. & Mrs. Paul Sponseller
Mr. & Mrs. John A. Squires
SSM Cardinal Glennon Children’s
Medical Center
St. Louis Children’s Hospital
St. Louis Tip Toppers Tall Club
Staten Island Community Group
Mr. William Stern
Ben Stiller & Christine Taylor
Ms. Sheila Stone
Mr. & Mrs. Roland Strick
Mr. Stuart Sucherman
Mr. Dennis Sullivan
George & Nancy Sumberaz
Mr. Graham Sutherland
Swavelle Mill Creek Fabrics, Inc.
Ms. Eileen Sweeney
Mr. Kirk Swensen
Tall Clubs International
Team Cassie Fundraiser/Abigail Conger
Team Cassie Fundraiser/Alissa DiPaolo
Team Cassie Fundraiser/Meg Sosnow
Team Cassie Fundraiser/Sarah Trillin
Team Victory–Chicago Half Marathon/
Aydan McCoy
Team Victory–Chicago Half Marathon/
Carly Siuta
Team Victory–Long Beach Marathon/
Frank Garcia
Team Victory–Long Beach Marathon/
Lisa Jeffries
Team Victory–Long Beach Marathon/
Kimberly Remulla
Team Victory–Long Beach Marathon/
Alyssa Ribaya
Team Victory–Marine Corps Marathon/
Scott & Amy Avitabile
Team Victory–Marine Corps Marathon/
Stephanie Begley
Team Victory–Marine Corps Marathon/
Amey Buchanan
Team Victory–Marine Corps Marathon/
Sarah Matthews
Team Victory–Marine Corps Marathon/
Elizabeth Weisman
Team Victory–New York City Triathlon/
Mary Louise Cohen
Team Victory–New York City Triathlon/
Andrew Gillespie
Team Victory–New York City Triathlon/
Shawn O’Meara
Team Victory–New York City Triathlon/
Elizabeth Weisman
Team Victory–Rock n Roll San Francisco
Marathon/Alex Filipkowski
Team Victory–Rock n Roll San Francisco
Marathon/Kim Fliege
Team Victory–Rock n Roll San Francisco
Marathon/Molly Miller
Team Victory–Rock n Roll San Francisco
Marathon/Jennifer Strick
Team Victory–Rock n Roll San Francisco
Marathon/Jeff Tennison
Team Victory–Rock n Roll San Francisco
Marathon/Nina Wheeler
Theo T. & Hilda Rose Foundation, Inc.
Robert W. Thompson, MD, FACS
Tiedemann Investment Group
Jeffrey & Tanya Tochner
Mr. Carl Toriello
Mr. Gregory Tosko
Mr. & Mrs. Michael Tracey
Tri-Star Construction
Peter & Marjorie Troob
Douglas & Robyn Troob
Keith & Catherine Turner
Twisted Salon Fundraiser/Caty Scales
US Raceworks LLC
Mr. & Mrs. Charles Vago
Mr. & Mrs. Mike Van Eekeren
Kjersti Vardeberg
Robert & Jennifer Vecchio
Richele Veloni
VF Corporation
Walk for Victory–Boston/Craig Broady
Walk for Victory–Boston/Rick Broady
Walk for Victory–Boston/Alison Hodges
Walk for Victory–Boston/Rebecca Lock
Walk for Victory–Boston/Sammi Morrill
Walk for Victory–Boston/Melissa Mosca
Walk for Victory–Boston/Jon Rodis
Walk for Victory–Boston/Lisa Stuart
Walk for Victory–Dallas/Christina Savage
Walk for Victory–Long Island/
Tracy Breen
Walk for Victory–Long Island/
Marie Hall
Walk for Victory–Long Island/
Carolyn Levering
Walk for Victory–Long Island/
Steve Marpman
Walk for Victory–Long Island/
Ellen Meiner
Walk for Victory–Long Island/
Philomena Ostapchuk
Walk for Victory–Long Island/
Katherine Schindlar
Walk for Victory-Phoenix/
Debbie Berkowitz
Walk for Victory–Phoenix/
Paula Bower
Walk for Victory–Phoenix/
Amber McDonald
Mr. & Mrs. John Wallace, Jr.
Ty & Doryn Wallach
Washington University School of
Medicine
Washington University School of
Medicine, Cardiovascular Division
Washington University School of
Medicine, Divison of Cardiothoracic
Surgery
Washington University School of
Medicine, Department of Vascular
Surgery
Michael & Ilene Weinberg
Benjamin & Lindsey Weisman
Gary Weiss & Debra Berkowitz
Ms. Virginia Weldon
Ms. Jennifer West
Wika Car Show/Gary & Peggy Wika
Evan & Amy Wildstein
William L. Richter Family Foundation
Cheryl & David Williams
Mr. Richard Wilpon
Mr. Robert Wilson
Ms. Julie Winch
Mr. & Mrs. Thomas Winter
Eric & Susan Wiseman
The Wolfe Foundation
The Women’s Group of the Greens, Inc.
The Zegans Law Group, PLLC
Ms. Mary Zeveski
Mr. & Mrs. Mikhail Zgurskiy
Kristin and Steve Zoerner
Ms. Jodi Zotkow
9
FINANCIAL COMMENTARY
The Marfan Foundation takes a very
deliberate, strategic approach to
fundraising and plans ahead for major
expenditures, particularly in the area
of research.
In 2014, the Foundation’s ongoing
commitment to funding several multiyear research studies and initiatives,
including the clinical trial ancillary
studies, fellowship grant program, and
aortic surgery studies, have continued
to be financed by previously raised
funds dedicated for these purposes.
This resulted in a planned deficit as we
spent down these funds, using them
for the purposes for which they were
raised. Although this resulted in an
overall deficit, there was an operating
surplus represented by an increase in
unrestricted net assets of $114K for
the year.
REVENUES FY 2014
memorials 2% FMV change, charitable
remainder trust 3%
membership 4%
conference
5%
contributions
35%
gifts in-kind
16%
events
35%
EXPENSES FY 2014
management
& general 9%
fundraising
14%
patient
services
23%
10
research &
grants
30%
public
information
24%
STATEMENTS OF ACTIVITIES
Years Ended June 30, 2014, and June 30, 2013
Temporarily
Restricted
Unrestricted
Year Ended
June 30, 2014
Year Ended
June 30, 2013
Changes In Net Assets:
Revenues and gains:
Contributions
$
1,226,311
$
43,500 $
1,269,811 $
1,377,872
Memorials
90,009
90,009
82,278
Membership contributions
146,493
146,493
118,159
Annual family conference
160,434
166,459
192,675
Other conference and symposia
Program revenue
Net investment income
Events, net of expenses of $373,623
and $295,880
Change in value of beneficial
interest charitable remainder trust
1,042
1,042
235
235
6,076
75,430
75,430
(6,905)
1,295,701
1,295,701
980,173
43,258
40,291
587,418
368,503
-
Gifts In-kind
6,025
43,258
587,418
Net assets released from restriction
1,145,573
(1,145,573)
-
-
4,728,646
(1,052,790)
3,675,856
3,159,122
1,409,045
1,409,045
1,569,615
Education and public awareness
1,087,341
1,087,341
792,964
Patient services and annual conference
1,049,918
1,049,918
922,050
3,546,304
3,284,629
Total revenues and gains
Expenses:
Program service expenses:
Research initiatives and grants
Total program service expenses:
3,546,304
-
Supporting services:
Management and general
419,798
419,798
357,942
Fundraising
648,615
648,615
563,050
Total supporting service expenses
1,068,413
-
1,068,413
920,992
4,614,717
-
4,614,717
4,205,621
Increase (decrease) in net assets
113,929
(1,052,790)
(938,861)
(1,046,499)
Net assets, beginning of the year
3,819,215
8,117,962
11,937,177
12,983,676
Total expenses
Net assets, end of year
$
3,933,144 $
7,065,172 $
10,998,316 $
11,937,177
11
STATEMENT OF FINANCIAL POSITION
June 30, 2014, and June 30, 2013
June 30, 2014
June 30, 2013
ASSETS
Cash
$
573,482 $
624,862
Investments
6,605,155
5,642,099
Pledges receivable, net
2,110,830
4,104,459
200,786
160,887
902,171
879,638
Beneficial interest charitable remainder trust
989,527
946,269
Other assets
142,869
135,125
11,524,820
12,493,339
183,291
303,716
200,344
131,779
142,869
120,667
526,504
556,162
2,023,793
1,917,152
Board designated
1,909,351
1,902,063
Temporarily restricted
7,065,172
8,117,962
10,998,316
11,937,177
Prepaid expenses and other current assets
Property and equipment, net
Total assets
LIABILITIES AND NET ASSETS
Accrued liabilities
Deferred conference income
Other payables
Total liabilities
Net Assets:
Unrestricted:
General
Total net assets
Total liabilities and net assets
$
11,524,820 $
12,493,339
The Foundation’s complete audited financial statements for the years ended June 30, 2014, and June 30, 2013,
may be viewed online at www.marfan.org or obtained by writing to The Marfan Foundation, 22 Manhasset Avenue,
Port Washington, NY 11050.
12
Photography: Santino Hunter; Timothy D. Joyce Photography; Frank Papini
Liabilities:
BOARD OF DIRECTORS 2013–2014
Raymond Chevallier
Chair
Karen Murray
Executive Committee
Mary J. Roman, MD
Vice Chair
Jon Tullis
Executive Committee
Beth Utz
Caryn Kauffman
Treasurer
Scott Avitabile
Benjamin Weisman
Maya Brown-Zimmerman
Priscilla Ciccariello
Chair Emeritus
Cory Eaves
Secretary
Gary Kauffman
Executive Committee
Teri Dean
Suzanne Kouri
Jerry Lerman
Alix McLean Jennings
Kathleen Mimnagh, MD
Nancy Sumberaz
Michael L. Weamer, CAE
Board Advisor
Whiteley Wheeler
Board Advisor
PROFESSIONAL ADVISORY BOARD 2013–2014
Alan C. Braverman, MD
Chair
Hal Dietz, MD
Reed E. Pyeritz, MD, PhD
Washington University School of Medicine
Johns Hopkins University School
of Medicine
University of Pennsylvania Perelman
School of Medicine
Peter H. Byers, MD
Sylvia A. Frazier-Bowers, DDS, PhD
Francesco Ramirez, PhD
University of Washington School
of Medicine
University of North Carolina
at Chapel Hill
Mount Sinai School of Medicine
Duke Cameron, MD
Ronald V. Lacro, MD
Johns Hopkins Hospital
Boston Children’s Hospital
Shriners Hospital and Oregon Health
& Science University
Heidi M. Connolly, MD
David Liang, MD, PhD
Paul D. Sponseller, MD
Mayo Clinic
Stanford University School of Medicine
Johns Hopkins University School
of Medicine
Joseph S. Coselli, MD
Irene H. Maumenee, MD
Baylor College of Medicine and
St. Luke’s Episcopal Hospital
University of Illinois Eye and Ear
Infirmary
Jessica G. Davis, MD
Dianna Milewicz, MD, PhD
NewYork-Presbyterian HospitalWeill Cornell Medical Center
University of Texas Medical School
at Houston
Richard B. Devereux, MD
D. Craig Miller, MD
NewYork-Presbyterian HospitalWeill Cornell Medical Center
Stanford University School of Medicine
Lynn Y. Sakai, PhD
Vincent L. Gott, MD
Member Emeritus
Johns Hopkins Hospital
Victor A. McKusick, MD
(1921–2008)
David L. Rimoin, MD, PhD
(1936–2012)
SCIENTIFIC ADVISORY BOARD 2013–2014
Craig T. Basson, MD, PhD
Chair
Novartis Institutes for Biomedical Research
Robert W. Thompson, MD
Terri L. Young, MD, MBA
Washington University School of Medicine
University of Wisconsin-Madison
Jonathan W. Weinsaft, MD
Victor A. McKusick, MD
(1921–2008)
Yale University School of Medicine
NewYork-Presbyterian-Weill Cornell
Medical Center
Brendan Lee, MD, PhD
Richard J. Wenstrup, MD
Baylor College of Medicine
Myriad Genetics Laboratories
John Elefteriades, MD
22 Manhasset Avenue, Port Washington, NY 11050 | 516.883.8712 | 800-8-MARFAN | Marfan.org