2009 Annual Report - Foundation Fighting Blindness

Transcription

COMMUNITY
FOUNDATION FIGHTING BLINDNESS
2009 ANNUAL REPORT
Moving Mountains
Camaraderie, Friendship, and Mutual
Support Drive Research
Spirit of St.Louis
Family and Friends Join Together
in a Walk to Fight Blindness
Baltimore:
Where the Fight Began
A Community Rallies to Support
Fundraising and Research
CEO LETTER
A great strength of the Foundation Fighting
Blindness throughout its 38-year history has
been its extraordinary sense of community.
When people become a part of the
Foundation — whether by joining a local
chapter, VisionWalk team, or event committee
— they become inspired and empowered to
do great things in support of our mission to
bring an end to vision-robbing retinal degenerative diseases. As
the Foundation’s chief executive officer, I am continually amazed
at how effectively the Foundation’s members work together.
That strong sense of community — that
commitment to work as a focused team — was
critical to our success during 2009. While
virtually every sector of the economy has faced
significant financial challenges, I am pleased to
report that the Foundation has weathered the
storm. Over the past year, we have made difficult
organizational adjustments, trimmed expenses,
and maintained sharp focus on our primary goal
— to find vision-saving cures. But our success
would not have been possible without the
collaboration and commitment from the
communities that make up the Foundation.
In this 2009 Annual Report, we tell the
stories of a few of those communities and their
extraordinary efforts to beat blinding retinal
degenerative diseases. We highlight: the Denver
Chapter, which has done an incredible job in
fundraising and community outreach; a
successful walk team in St. Louis led by the
mission-driven Morris family; and the
community of Baltimore, where the fight against
blindness first began and continues to this day.
We also feature a Q&A with Gordon Gund,
the Foundation’s co-founder and chairman, who
provides a compelling recount of our early days,
and how a small group of committed families
ON THE COVER Leslie and Jack Morris, St. Louis
evolved into the great national organization we
are today.
The Foundation is committed to innovative
research — research that is now restoring vision
in people who were virtually blind. But research
does not come in a nicely wrapped package with
a bow. It takes a tremendous amount of painstaking collaboration by scientists from around
the world, and their great accomplishments are
highlighted in this report, as well.
With more clinical trials for sight-saving
treatments underway than ever before, hope and
optimism are running high. But much more work
remains to move these and other emerging
treatments forward. The work we need to do
isn’t easy, but together we will get it done.
Thank you for all you did to make 2009 a
year of great progress. Thank you for being a part
of our community.
Sincerely,
William T. Schmidt
Chief Executive Officer
Foundation Fighting Blindness
A Shared
Vision
Foundation Fighting Blindness Co-Founder
and Chairman GORDON GUND is an
admired leader and visionary. He is greatly
respected throughout the international
business community for his investment
savvy and successful co-ownership of
three hockey franchises and the NBA’s
Cleveland Cavaliers.
But business is only one side of Gordon Gund; his passion and talents extend beyond the
boardroom to the arts and to athletics. Though he completely lost his sight to retinitis pigmentosa
more than 30 years ago, Gordon is, today, an avid downhill skier and an experienced fly
fisherman. Also an accomplished amateur sculptor of wood and cast-bronze, one of his pieces
is on display in the Philadelphia Museum of Art.
Of all his talents, perhaps most notable are Gordon’s warmth, compassion, and honesty; he
is quick to make friends and gain insight into their stories. Over the last 38 years, the Foundation
Fighting Blindness has risen to be one of the most successful nonprofit research organizations to
ever exist, thanks in large part to Gordon’s leadership, and his ability to rally and inspire people to
join in the fight that he and the other founders began all those years ago.
In the following interview, Gordon reflects on the emergence of the Foundation, its work and
mission, and perhaps most important, the communities that have formed within and around the
Foundation to passionately drive its success.
Q: What was it like to learn you had a disease
that was stealing your vision?
When I was diagnosed with retinitis pigmentosa
more than 44 years ago, I was a husband and
young father just out of the Navy, and starting my
career in New York City. My vision loss
progressed rapidly—much faster than the doctors
told me it would. Although I was told I would
have some vision for the rest of my life, I was blind
in a little more than five years. Very little was
known then about retinitis pigmentosa and other
retinal degenerative diseases. With my vision
degenerating rapidly, I was quite anxious to find
the answers. My wife Lulie and I, who were alone
in this frantic search, went all over this country
pursuing paths that led to dead ends. Shortly after
my central vision closed in, I even travelled to
Russia with the hope of finding a cure. That
trip also led to a dead end and eventually to a
commitment by Lulie and me to turn our
frustration into something positive.
Q: How did the Foundation begin?
The Foundation began in 1971 as a small group of
families who not only shared the same frustrations
and challenges, but also the same determination to
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find answers. While we knew so little about how or where
to start, we knew that together we could do more. There was
the realization that we were the ones, the only ones, who
would find the cures. No one else would do it for us. While
we were at square one in finding answers, Lulie and I
became hopeful, because we knew we were not alone. We
were part of a passionate and committed team.
Q: How did you find other families affected by
retinal degenerative diseases?
In the spring of 1971, Dr. Eliot Berson at Harvard Medical
School brought Lulie and me together with Ben and Beverly
Berman. These friendships and serendipity then led to the
involvement of the rest of the founding group. Dr. Berson
was an up-and-coming retinal doctor and researcher
interested in starting a lab to learn more about retinal
degenerative diseases. The establishment of the Harvard
University multi-disciplined Berman-Gund Laboratory at
the Massachusetts Eye and Ear Infirmary
was the Foundation’s first research
project. It was a successful collaboration
between the research community and the
Foundation’s families, and Dr. Berson and
the lab are still doing great work today.
Q: What accounts for the Foundation’s accelerated
growth in recent years?
Undoubtedly, our chapters have driven our growth. We have
nearly 50 chapters across the country, and they have done an
extraordinary job organizing and mobilizing members of
their communities, especially families affected by retinal
diseases, to work together to drive research and raise
awareness. Chapter-driven events such as VisionWalk and
Visionary Awards Dinners are raising millions of dollars to
fund research.
In 2005, we made a major investment in chapter and
event development, because forthcoming clinical trials were
requiring much more revenue than we were bringing in. The
strategy has worked well. VisionWalk, for example, has raised
more than $10 million in just over three years. However, our
work is far from done. We still have dozens of high-quality
research projects that are going unfunded and more clinical
trials will soon be starting.
Chapter-driven events such as VisionWalk
and Visionary Awards Dinners are raising
millions of dollars to fund research.
Q: How did the Foundation grow and expand?
The Foundation’s board of directors and national trustees
have always played an exceptionally active role in guiding
the organization and raising money for research. They’ve also
been a very close-knit group. It’s been like a family. And what
brought and kept us together was the desire to find a cure.
Most of us were affected by a retinal degenerative disease,
and we all shared the passion and urgency to drive the
research. Bringing more members and funding into the
Foundation’s fold has always been a priority.
Q: Was it difficult to find scientists to do the research?
We knew early on that we needed to recruit and engage the
best retinal physicians and researchers to conduct the
research and guide our research investments. And looking
back, I have to say we did a superb job establishing a
community of scientific experts, the Scientific Advisory
Board, to give us direction. We brought on Dr. Alan Laties,
Dr. John Dowling, Dr. Morton Goldberg, and other
extraordinarily bright minds. They’ve led us for decades
with the utmost foresight, commitment, and dedication.
They are not only the best in retinal research, they too, are a
very close-knit group, and we are fortunate that they share
our unwavering passion to find cures.
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2009 ANNUAL REPORT OF THE FOUNDATION FIGHTING BLINDNESS
Q: Why does the chapter model work so well?
Just as the Foundation itself started out as, and continues to
be, a family, chapters operate like families, as well. Chapter
members provide mutual support and establish close
friendships. They know how to reach out to their local
communities. They work hard to raise money and
awareness. They share their challenges and their victories.
It’s all about working together. We can do so much more
together as a team than we can alone, and our chapter
leaders and volunteers know that well. They are
our lifeblood.
Q: How do you see the future?
In 2008, when our researchers first reported they were
reversing vision loss for people with Leber congenital
amaurosis, we were ecstatic. It was the greatest
breakthrough in the Foundation’s history and perhaps the
greatest ever in retinal research. We crossed a critical
threshold when our researchers actually restored sight. It
launched us into a new era where more and more people
will have their sight saved or restored every year. A lot of
work remains until we eradicate the entire spectrum of
blinding retinal diseases. But we’ll get there by continuing
to work together, and we will not rest until we do.
Gordon Gund at his home with
5-year old Fozzy Bear, one of
more than 60 Briard dogs,
previously blind from Leber
congenital amaurosis, that have
had vision restored by gene
therapy. The Foundation, today,
continues to fund LCA gene
therapy clinical trials in humans.
“Things are happening at a terrific rate.
It’s been a long time coming. When the
work you’re doing isn’t producing the
‘silver bullet,’ you want to change
direction, but when you allow that to
happen, you go nowhere. The research
field is like a snowball rolling downhill –
gathering size, speed.”
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RESEARCH COMMUNITY
Amazing
Advances
A Global Effort
Building a Global Team to Fight Blindness
The advances coming from the retinal research
front lines were nothing short of remarkable
during 2009. Teams of Foundation-funded
researchers from across the globe — from the U.S.
to the U.K. to France and China — continued to
make extraordinary breakthroughs in their tireless
quest to bring sight-saving treatments into human
studies.
Investigator collaboration and knowledge
sharing continued to be keys to the expedience and
success of these innovations. As it has throughout
its 38-year history, the Foundation provided several
forums and opportunities for the world’s top
retinal researchers to collaborate and share their
advances, challenges, and strategies for moving
forward. Some meetings revolved around a specific
disease. In other instances, the investigators shared
their expertise about a specific treatment approach
such as gene therapy or stem cells. They also
convened to discuss the Foundation’s long-range
priorities for future research.
The Foundation’s Scientific Advisory Board,
a dynamic committee of many of the world’s top
retinal researchers and physicians, evaluated
each grant proposed to the Foundation, ensuring
that only the best, most promising projects
received funding.
In 2009, the Foundation funded 151 projects
spread among 81 of the world’s top retinal research
institutions, including 18 research grant centers,
which are comprised of both laboratory and
clinical investigative teams specifically chartered
with working collaboratively to advance
treatments and cures.
Faster Cures through Collaborative
Commercial Partnerships
The Foundation continued to accelerate the
translation of promising research into human
trials through its clinical support organization,
the National Neurovision Research Institute.
In 2009, the Foundation formed several new
partnerships with biopharmaceutical companies,
including Applied Genetic Technologies
Corporation and Adeona Pharmaceuticals. These
companies provide the regulatory, production,
and promotional expertise necessary to make
promising treatments available to the people who
need them. Previously established partners such
as Oxford BioMedica, which is developing a gene
therapy for Stargardt disease, and Genable, which
is advancing gene therapy for dominant forms of
retinitis pigmentosa, continue to make excellent
progress in moving their vision-saving treatments
toward clinical trials.
Clinical Trial Network to Evaluate
Promising Treatments
The Foundation is launching a clinical trial network to quickly move
emerging treatments into clinical studies. Known as the National Eye Evaluation
Research network, the initial study centers of the network include: University of
Medicine and Dentistry of New Jersey, University of Utah, The Children’s Hospital
of Philadelphia, Wilmer Eye Institute at Johns Hopkins Hospital, and the University
of California, San Diego.
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Dr. Stephen Rose, chief research
officer of the Foundation, joins the
Haas family on the CBS Early Show.
Nine-year old Corey Haas was
nearly blind 14 months ago from
LCA. After a single treatment of
gene therapy at The Children’s
Hospital of Philadelphia, he can
now play baseball and read books.
Seeing the Light: Gene Therapy Continues
to Dramatically Restore Vision
After more than a year, gene therapy clinical
studies for people with Leber congenital
amaurosis continue to produce incredible results.
One 8-year-old boy was able to put away his
white cane after treatment. A woman saw fireflies
for the first time after receiving therapy. More
than 20 people are now participating in Phase I
Foundation-funded trials at The Children’s
Hospital of Philadelphia and Moorfields Eye
Hospital in the U.K., as well as a study at the
Universities of Pennsylvania and Florida.
Researchers are evaluating higher doses in a
broader spectrum of participants with the hope
of restoring even more vision. Success in these
studies is paving the way for using gene therapy
to treat a wide variety of retinal degenerative
diseases. In fact, Applied Genetic Technologies
Corporation, a Foundation partner, has launched
a Phase I/II gene therapy clinical trial for LCA,
and is also planning gene therapy clinical
trials for people with age-related macular
degeneration, retinoschisis, and achromatopsia.
syndrome, and choroideremia. The innovative,
implantable capsule — the size of a rice grain —
provides sustained release of a vision-preserving
protein known as ciliary neurotrophic factor.
Rebuilding the Retina with Cell-Based
Treatments
Thanks to Foundation-funded investigators
from the University of Wisconsin–Madison,
reprogrammed skin cells may one day be used to
restore vision in people affected by a broad range
of retinal degenerative diseases. Using an
innovative technique, the research team was able
to turn back the clock on skin cells, turning them
into stem cells, and then coaxing them to become
retinal cells. Following repair of the “bad” gene,
these newly derived retinal cells could be an
effective replacement for retinal cells lost
to disease.
In addition to this team, several Foundationfunded investigative groups — including those
from Harvard University, Oregon Health and
Sciences University, and the University of
Washington — continue to develop promising
cell-based treatments to save and restore vision.
A Tiny Capsule Provides Hope for AMD
and Other Diseases
In a Phase II clinical trial, Neurotech’s
Encapsulated Cell Technology stabilized vision
in people with dry age-related macular
degeneration — a leading cause of blindness in
developed countries and a condition for which
there are virtually no available treatments. The
device also showed encouraging interim results in
ongoing Foundation-funded Phase II/III clinical
studies for people with retinitis pigmentosa, Usher
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NATIONAL COMMUNITY
Outreach,
Awareness,
& Information
With over 100,000 donors and volunteers, 46 chapters, and staff in
nine regional offices across the country, the Foundation Fighting
Blindness boasts a large and diverse national community. It is an
exciting time to be part of the Foundation’s network; research is
progressing faster now than ever before. As the leading source
of disease and research information for families living with retinal
degenerative diseases, the Foundation is fully committed to
providing its national community with the information they need
to understand and manage their conditions and stay current
on the latest advances in research.
From Grassroots to Global
For the Foundation Fighting Blindness, the
concepts of raising money for research and
raising public awareness around retinal diseases
go hand-in-hand. One cannot be successful
without the other. In 2009, the Foundation
invested resources to help raise public awareness
about the prevalence of retinal diseases and the
promising advancements that are taking place
thanks to the hard work of our donors,
volunteers, and researchers.
Over the last year, a major emphasis was
placed on media outreach and, through the efforts
of our dedicated volunteers, leadership and staff,
the Foundation gained a tremendous amount of
visibility in regional and national publications and
radio and television outlets across the country.
Coverage included advancements in research,
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Foundation partnerships, and fundraisers like
VisionWalk, Visionary Awards Dinners and other
local events.
The Foundation’s outreach and education
programs also helped to grow our national
community. In addition to chapter meetings and
science presentations, Vision Seminars were held
in 11 communities throughout the country. Over
3,500 individuals attended these events, many of
whom were new to the Foundation, and enjoyed
educational presentations from some of the best
researchers and clinicians in the country.
Additionally, more than 20 retinal specialist
practices joined forces with the Foundation
through Partners for Retinal Health, a program
designed to form professional partnerships with
top clinicians and provide information and
resources to patients nationwide.
A Valuable Resource
In spite of the difficult economic environment,
the Foundation continued to provide the
research and clinical trial information, and
motivational stories that our members depend
upon. Over 70,000 individuals received regular
updates through the Foundation’s electronic
newsletter, InFocus Online, which was sent out
six times during the year.
Additionally, thousands of affected
individuals received valuable disease and current
treatment information by calling our Information
and Referral Department and off-site call center.
Our Online Community
With over 250,000 visitors in 2009, the
Foundation’s Web site, www.FightBlindness.org,
continued to be one of our greatest tools for
staying connected with our members. Last year,
our online community grew tremendously with
the addition of 40 chapter Web pages. Each
page, dedicated to a specific chapter, serves as a
one-stop shop for members to access all things
chapter-related, including a calendar of
upcoming meetings and events, chapter
highlights, and local resources.
Last year, the Foundation also rode the
social networking wave by creating a strong
presence on Facebook, Twitter, MySpace, and
YouTube. Members also continued to connect
with one another on the Foundation’s
message boards.
Action Through Advocacy
Through the diligence of our members, visits to
Capitol Hill, and congressional briefings, the
Foundation helped to raise awareness about the
need for increased legislative support and
funding for research. Thanks to many of your
emails and requests to your senators and
representatives, $10 billion in vital research
funding was directed to the National Institutes
of Health as part of the American Recovery and
Reinvestment Act of 2009. This increase
translates into increased funding for the
National Eye Institute, which is indispensible to
ensuring that research for retinal degenerative
diseases will accelerate the advancement of
sight-saving treatments and cures.
For more information on the Foundation’s
legislative priorities and advocacy initiatives, visit
the Action Center on the Foundation Web site.
LEFT Former Secretary of Commerce Carlos Gutierrez
serves as co-chair of the annual For the Love of Sight
Valentine's Dinner, a major fundraising and advocacy
event in Washington, D.C.
TOP 2009 VisionWalk participants
BOTTOM John Corneille at 2009 Day of Science.
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When it comes to fighting blindness,
the Foundation’s DENVER Chapter means business.
Moving Mountains
PHOTOGRAPHY BY ERIC STEPHENSON
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LEFT TO RIGHT
Renita, Alexa, Scott and
Austin Burt; Carl and Sherri
Kroonenberg; Drew McLean;
Richard and Claudia Faubion;
and Dr. Alan Kimura
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WHILE MEMBERS OF THE DENVER CHAPTER value the camaraderie, friendship, and
mutual support that come with participating in a chapter, their goal is clear: to drive research
that will provide sight-saving cures. And by working as a collaborative team, they have
launched several highly successful fundraising events and initiatives to fund research,
including: the Swing for Sight golf tournament, VisionWalk, and Blind Taste of the Rockies.
Chapter leadership is comprised of people
with strong planning and organizational skills,
and they deftly apply those talents to running
the chapter and fundraising. Every month, they
take a few hours out of their busy professional
schedules to conduct chapter business and
raise the group’s visibility in Denver and
surrounding communities.
Sherri Kroonenberg, a senior vice
president at Charles Schwab, serves as chapter
secretary. She and her husband, Carl, became
involved with the Foundation more than 10
years ago, because they wanted to play an
active role in finding a treatment for the Usher
syndrome that has taken much of Carl’s
hearing and vision.
“The chapter provides a forum for us to
build community on a local level, enabling us to
involve our friends, families and colleagues in
the pursuit of treatments and cures,” says Sherri.
“There are definite challenges in raising money
— the economy and even competing charities —
but tell us that we can’t do it and we are even
more determined to show you that we can.”
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Established in the late 1970s, the chapter got
a major boost in 2000 when Scott and Renita Burt,
the Kroonenbergs and other members launched
Swing for Sight — a golf tournament that has raised
an impressive $760,000 over the last nine years.
The Burt’s 14-year-old son, Austin, has retinitis
pigmentosa and is also raising money for research
by educating his schoolmates about retinal
diseases and the need to fund research to
develop treatments.
Scott, who is president of Integro, an
information technology company, also serves as a
national trustee for the Foundation. He says, “The
golf tournament not only raised critical funds for
research, it raised awareness about retinal diseases
within the Denver community and served as a
catalyst for chapter expansion. Our son has a great
attitude about RP, but he has lost a lot of vision for
a young guy, so we feel a strong sense of urgency
to find a cure.”
A key to the success of Swing for Sight was
chapter members recruiting family members,
friends, and businesses to take part in, and
contribute toward, the event. Scott was able to
obtain Microsoft as a multi-year title sponsor,
which was a big win and major catalyst for raising
the event’s visibility and attracting many additional
sponsors and contributors.
Through the tireless and creative efforts of
chapter members, the tournament has emerged as
much more than a game of golf; it has become a
day-long experience that includes: lunch, dinner,
auctions, a raffle, and competitions.
The chapter recently selected Drew McLean,
a 30-year-old software architect/project manager
for EffectiveUI, as their new president. Sherri says
that chapter members were impressed with
Drew’s passion, energy, and can-do attitude, and
those qualities make him an excellent leader
and organizer.
And like other chapter members, Drew
enjoys a good challenge. With significant
night-blindness and limited peripheral vision
caused by RP, Drew is an avid rock-climber and has
scaled cliffs around the world. “Many people think
rock climbing is crazy,” says Drew, “especially if
you only have 20 degrees of central vision
remaining. I won’t disagree. It is definitely not
for everyone.”
While Drew lives an independent and active
life, he is quick to point to the inspiration and
support he gets from his fellow chapter members.
“There is so much to be gained from other people
who share the same challenges. We share the same
hope for a brighter future.”
Thanks to the growing list of chapter
volunteers, members, and leaders, local fundraising
events are doing well. Blind Taste of the Rockies, a
wine tasting event, raised $24,000 in its first year,
and the 4th annual Colorado VisionWalk, which
took place in October 2009, brought in over
$132,000. The recruitment of Walmart as a major
sponsor of the Colorado VisionWalk, and more
recently, other VisionWalks around the country,
has provided a major boost to fundraising and
public awareness.
In addition to driving retinal research
through fundraising, Denver Chapter members
have a strong passion for learning about the latest
scientific advances. They frequently organize
meetings and talks to hear research updates from
medical and research experts. Dr. Alan Kimura, a
retinal specialist from Colorado Retina Associates,
is the chapter’s medical chairman, and plays a lead
role in disseminating research information.
“I enjoy translating complex concepts into
simpler concepts,” says Dr. Kimura. “By joining the
chapter, I saw an opportunity to make a difference.
The Denver group is a smart bunch of highly
motivated people able to come together for a
common purpose. I am privileged to work
with them.”
There are definitely challenges in
raising money, but tell us that we
can’t do it and we are even more
determined to show you that we can.
Dr. Kimura also participates in the
Foundation’s Partners for Retinal Health program,
which links patients with retinal specialists,
research information, and critical low vision
resources.
The Foundation has 46 volunteer-led
chapters across the United States. These
dedicated groups of volunteers raise funds,
increase public awareness, and provide
support to their communities.
The Burt family has been very involved with the
successful Swing for Sight golf event in Denver.
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Spirit of St.Louis
VisionWalk has given Jason and Leslie Morris a sense of
empowerment, providing them an opportunity to drive the research
that can save their son’s vision. They are also incredibly heartened by
how the ST. LOUIS Community has reached out to their son and family.
PHOTOGRAPHY BY VIRGINIA LEE HUNTER
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Jason, Jack and Paige Morris
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JASON AND LESLIE MORRIS WILL NEVER FORGET NEW YEARS 2009.
Their five-year-old son, Jack, hadn’t been seeing well at night, so they had taken him to
a number of eye doctors to determine what was wrong. On December 31, 2008, they
learned the devastating and shocking news that Jack was losing his vision to a retinal
degenerative disease. “We struggled and we grieved heavily,” recalls Jason. “We didn’t
even know these retinal diseases existed.”
As unexpected as this news was in the lives of the
Morris family, equally surprising was the
outpouring of support they would receive in the
coming months from family, friends, colleagues,
doctors, and research professionals.
Just three weeks after Jack’s diagnosis,
Jason and Leslie attended a Foundation Fighting
Blindness chapter meeting in St. Louis and, a
month later, the Foundation’s Day of Science
meeting in Orlando. “We were very impressed
with the urgency and focus on cures. The
Foundation was clearly a group of people that
wasn’t messing around,” recalls Jason.
That realization was all they needed; just
four months after Jack’s diagnosis, the family got
involved with the Foundation’s VisionWalk
program, forming a walk team called Jackmo’s
Joggers. Leslie adds, “We decided we were not
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going to sit back and be consumed by this. We
were going to go out and try to make a difference
by raising money for research.”
The Morrises were awestruck by the many
people in their lives and throughout the St. Louis
community who rallied in support of Jackmo’s
Joggers, which raised more than $45,000.
Leslie credits Jason’s parents, Bob and Jill
Morris, with being instrumental in the
fundraising success. “Jason’s parents give so
much of themselves — freely and unconditionally.
There was no question for them that they were
going to go into this full steam. They sent out 200
letters to their friends, and the support from their
church group was huge,” says Leslie. One of Bob
and Jill’s neighbors hand delivered hundreds
of fundraising letters throughout their townhome community.
OPPOSITE PAGE
Top Left Jill Morris
Bottom Left Jim Minow, Chief Development Officer
of the Foundation
THIS PAGE
Top Mayor Francis Slay
Bottom (Pictured in Orange) April, Luke and
Strong support also came from Jack’s school,
teachers and parents of classmates, as well as
from the local ophthalmology practices that had
seen Jack. Jason, who served as the walk’s
business chair, inspired many of his contacts
and acquaintances to get on board with giving
and fundraising.
The Morrises have also been very grateful
for the community of research professionals
and physicians that provided invaluable
information and support. Just two days after
Jack was diagnosed, Jason spent an hour on the
phone with Foundation-funded physician and
researcher Ed Stone of the University of Iowa,
Carver Laboratory. “He took so much time
to provide comfort and let me know what
was going on,” says Jason. “That was
extraordinary.” The family later corresponded
with Dr. John Heckenlively, of the Foundationfunded Kellogg Eye Center at the University of
Michigan, and visited another Foundationsupported researcher, Dr. Gerald Fishman of
the University of Illinois, Chicago, for
additional support and information.
The past year has been an emotional
whirlwind for the Morris family. While it has
been incredibly tough, they have found some
silver linings. Their 4-year-old daughter, Paige,
appears to be unaffected. Also, the Carver
Laboratory was able to find the genetic variation
that is causing Jack’s vision loss. That
information may help with treatment down
the road.
While VisionWalk has given the Morrises
a sense of empowerment, providing them an
opportunity to drive the research that can save
their son’s vision, they are incredibly heartened
by how the local community has reached out to
their son and the family. “We have received so
much love and support. It’s been fantastic. It’s
been so far beyond our expectations,”
says Leslie.
Bryce Marsaglia of team “Bryce Bryce Baby”
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Baltimore:
Where the Fight Began
What began as a small group of families has emerged as a national
organization with a passionate army of volunteers, donors, and partners.
That momentum can be felt nowhere more than in BALTIMORE , where
the fight against blindness began.
PHOTOGRAPH BY KEVIN MOORE
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A view of Ravens Stadium
from Baltimore’s Federal Hill
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BALTIMORE IS PASSIONATE ABOUT ITS professional sports franchises and
proud of its iconic native sons such as Babe Ruth, Edgar Allen Poe, and John Waters.
Francis Scott Key was inspired to pen The Star Spangled Banner after witnessing
the bold, heroic defense of Fort McHenry during the Battle of Baltimore, a critical
turning point in the War of 1812.
Baltimore is also the home of the Foundation
Fighting Blindness, where its founders came
together nearly four decades ago to wage their
own war against blinding retinal degenerative
diseases. Over the years, what began as a small
group of families has emerged as a national
organization with a passionate army of
volunteers, donors, and partners. That
momentum can be felt nowhere more than in
Baltimore, where the community has rallied
around the local chapter to support fundraising
and outreach events and drive the Foundation’s
mission to find vision-saving cures.
The Baltimore Visionary Awards Dinner has
emerged as a standout Baltimore event and is a
testament to the Foundation’s strong ties within
the community. In just three years, it has grown in
size and revenue — more than $700,000 has been
raised — and has been a catalyst for many of the
relationships that have formed between the
18
Foundation and several Baltimore-based and
nationally recognized businesses and institutions,
including: The Johns Hopkins University, the
Wilmer Eye Institute, Legg Mason, T. Rowe Price,
and the Baltimore Ravens.
This year’s dinner, held on September 29,
2009, was executed in true Baltimore fashion.
Dubbed a “purple carpet event,” the dinner took
place at M&T Bank Stadium, home of the city’s
beloved Baltimore Ravens. More than 300 guests
were present as the Foundation honored four
individuals with strong Baltimore roots and an
even stronger desire to better their community.
Bruce and Bonnie Sawyer, long-time members
of the Foundation Fighting Blindness, were honored
for their outstanding support and unwavering
commitment over the last decade. Bruce serves on
the Foundation’s board of directors, and he and
Bonnie have played key roles in a variety of local
fundraising events and campaigns. Their steadfast
commitment stems from their desire to save the
vision of their daughter, Betsy Sawyer Bradley, and
millions of others across the country and around
the world.
The dinner also honored Arthur and
Patricia Modell for their generous philanthropic
and cultural contributions to the city of
Baltimore. Perhaps best known for bringing an
NFL team back to Baltimore in 1996, the Modell’s
establishment of the Ravens franchise brought
new life to the city. And their commitment to the
fight against blindness was instrumental to the
success of the dinner.
More than $300,000 was raised for the
Foundation, a feat made possible by these
extraordinary honorees, the support of the
Baltimore business community, and the outreach
and planning of the dinner committee.
Dr. Mort Goldberg, chairman of the
Foundation’s clinical trials support organization
and former director of the Wilmer Eye Institute at
Johns Hopkins, served as chair of the dinner
committee. A past Visionary Award recipient, he
has played an indispensible leadership role in
attracting support throughout Baltimore. “When it
comes to the fight against blindness, Baltimore is a
special place, because it is the home of the
Foundation and the Wilmer Eye Institute — two
organizations passionately leading the way in
finding sight-saving treatments and cures,” says
Mort. “That passion extends into the community
where local businesses and leaders see a great
opportunity to make a difference.”
THIS PAGE (CLOCKWISE FROM TOP LEFT)
Bruce & Bonnie Sawyer, Visionary Award Recipients
with their family Betsy & Bill Bradley, Nancy & Otto
Sheridan, and David Sawyer; Dr. Ben Carson and
Ronald Peterson, president of The Johns Hopkins
Hospital; Dinner Committee Members Cheryl
Malone and Lu Ann Blackman; former Ravens
Matt Stover congratulates Art and Pat Modell
COMMUNITY
19
Research Grants
2009
FFB CENTER GRANTS
The following 18 Foundation-funded
Centers foster the collaborative efforts of
independent research institutions —
pairing basic scientists with clinical
investigators — enabling them to better
share knowledge and resources to more
effectively develop promising treatments
and cures.
Berman-Gund Laboratory for the
Study of Retinal Degenerations
Harvard Medical School, Massachusetts
Eye and Ear Infirmary, Boston, MA
Eliot L. Berson, M.D., Center Director
$380,000
Principal Investigators: Eliot L. Berson, M.D.,
Tiansen Li, Ph.D.
The Children’s Hospital of Philadelphia —
Penn Pediatric Center for Retinal
Degenerations
University of Pennsylvania, Philadelphia, PA
Jean Bennett, M.D., Ph.D., Center Director
$211,246
Principal Investigators: Jean Bennett, M.D.,
Ph.D., Eric A. Pierce, M.D., Ph.D., Edward
N. Pugh, Jr., Ph.D.
The Cleveland Clinic Foundation
Research Center for the Study of Retinal
Degenerative Diseases
Cole Eye Institute, Cleveland, OH
Joe G. Hollyfield, Ph.D., Center Director
$237,808
Principal Investigators: John W. Crabb,
Ph.D., Stephanie A. Hagstrom, Ph.D., Joe G.
Hollyfield, Ph.D., Neal Peachey, Ph.D.
Greater New York Regional Research
Center for the Study of Retinal
Edward S. Harkness Eye Institute,
Columbia University, New York, NY; New
York University School of Medicine, New
York, NY; University of Medicine and
Dentistry, New Jersey Medical School,
Newark, NJ
Ronald E. Carr, M.D., Lucian V. Del Priore,
20
M.D., Ph.D., Marco A. Zarbin, M.D., Ph.D.,
Center Co-Directors
$492,218
Principal Investigators: Rando L. Allikmets,
Ph.D., Ronald E. Carr, M.D., Lucian V. Del
Priore, M.D., Ph.D., Stephen Tsang, M.D.,
Ph.D., Marco A. Zarbin, M.D., Ph.D.
Jules Stein Eye Institute Research Center
for the Study of Retinal Degenerative
Diseases
University of California, Los Angeles, CA
Dean Bok, Ph.D., Center Director
$364,294
Principal Investigators: Dean Bok, Ph.D.,
Michael Gorin, M.D., Ph.D., Gabriel H.
Travis, M.D., Xian-Jie Yang, Ph.D.
Kearn Family Center for the Study
of Retinal Degeneration
University of California, Berkeley, CA;
University of California, San Francisco,
CA; Stanford University School of
Medicine, Stanford, CA
Matthew M. LaVail, Ph.D., Center Director
$463,457
Principal Investigators: Michael Danciger,
Ph.D., Jacque L. Duncan, M.D.,
John G. Flannery, Ph.D., Matthew M.
LaVail, Ph.D., Austin Roorda, Ph.D.,
Douglas Vollrath, M.D., Ph.D.
W.K. Kellogg Eye Center for the
Study of Retinal Degenerative Diseases
University of Michigan, Ann Arbor, MI;
University of California, San Diego, CA
John R. Heckenlively, M.D., Center Director
$587,769
Principal Investigators: Radha Ayyagari,
Ph.D., John R. Heckenlively, M.D., Hemant
Khanna, Ph.D., Debra A. Thompson, Ph.D.,
David N. Zacks, M.D., Ph.D.
The Michael M. Wynn Research Center
for the Study of Retinal Degeneration
Moran Eye Center, University of Utah,
Salt Lake City, UT; Tufts University
School of Medicine, Boston, MA
Wolfgang Baehr, Ph.D., Center Director
$229,746
Principal Investigators: Wolfgang Baehr,
Ph.D., Paul Bernstein, M.D., Ph.D., Jeanne
Frederick, Ph.D., Rajendra Kumar-Singh,
Ph.D., Kang Zhang, M.D., Ph.D.
Oregon Health & Science University
Casey Eye Institute, Portland, OR;
University of Florida, Gainesville, FL
Richard G. Weleber, M.D., Center Director
$488,259
Principal Investigators: William W.
Hauswirth, Ph.D., Raymond D. Lund, Ph.D.,
Martha Neuringer, Ph.D., Richard G.
Weleber, M.D.
Paris Research Center for the Study
of Retinal Degenerative Diseases
INSERM, Hôpital Saint-Antoine, Hôpital
des Quinze-Vingts, UCL, Paris, France
José-Alain Sahel, M.D., Center Director
$242,500
Principal Investigators: Thierry Léveillard,
Ph.D., Saddek Mohand-Said, M.D., Ph.D.,
Christine Petit, M.D., Ph.D., José-Alain
Sahel, M.D.
Pre-Clinical Medical Therapy
Evaluation Center
Cornell University, Ithaca, NY; University
of Pennsylvania, Philadelphia, PA
Gustavo Aguirre, V.M.D., Ph.D., Center
Director
$500,000
Principal Investigators: Gregory M. Acland,
B.V.Sc., Gustavo Aguirre, V.M.D., Ph.D.,
Barbara Zangerl, D.V.M., Ph.D.
Research Center for Macular
Degeneration and Allied Retinal
Disorders
University of Iowa, College of Medicine,
Iowa City, IA
Edwin M. Stone, M.D., Ph.D., Center
Director
$421,883
Principal Investigators: Terry A. Braun, Ph.D.,
Todd E. Scheetz, Ph.D., Val Sheffield, M.D.,
Ph.D., Edwin M. Stone, M.D., Ph.D.
Ph.D., James F. McGinnis, Ph.D., Muna
Naash, Ph.D., Dianna K.H. Wheaton, Ph.D.
Degenerative Diseases at the Institute of
Ophthalmology and Moorfields Eye
Hospital
Institute of Ophthalmology, University
College London, London, United Kingdom
Frederick W. Fitzke, Ph.D., Center Director
$329,796
Principal Investigators: Shomi
Bhattacharya, Ph.D., Alan Bird, M.D.,
Frederick W. Fitzke, Ph.D., Graham E.
Holder, Ph.D.
University of Illinois at Chicago Research
Center for the Study of Retinal
University of Illinois at Chicago Eye
Center, Chicago, IL
Gerald A. Fishman, M.D., Center Director
$171,882
Principal Investigator: Gerald A. Fishman,
M.D.
Scandinavian Center for the Studies
on Hereditary Retinal Diseases
Wallenberg Retina Center, University
Hospital of Lund, Lund, Sweden
Theo van Veen, Ph.D., Center Director
$233,389
Principal Investigators: Sten Andréasson,
M.D., Ph.D., Theo van Veen, Ph.D.
Scheie Eye Institute Retinal Degeneration
Research Center
University of Pennsylvania, Philadelphia,
PA; University of Florida, Gainesville, FL;
School of Medicine, Case Western
Reserve University, Cleveland, OH;
Cornell University, Ithaca, NY
Samuel G. Jacobson, M.D., Ph.D., Center
Director
$332,127
Principal Investigators: Gustavo Aguirre,
V.M.D., Ph.D., Artur V. Cideciyan, Ph.D.,
William W. Hauswirth, Ph.D., Samuel G.
Jacobson, M.D., Ph.D., Krzysztof
Palczewski, Ph.D.
Southwest Regional Research Center for
the Study of Retinal Degenerative
Diseases
Retina Foundation of the Southwest,
Dallas, TX; The University of Oklahoma
Health Sciences Center, Oklahoma City,
OK; The University of Texas Health
Science Center at Houston, TX; Mayo
Clinic, Rochester, MN
Robert E. Anderson, M.D., Ph.D., David G.
Birch, Ph.D., Center Co-Directors
$582,601
Principal Investigators: Muayyad R. AlUbaidi, Ph.D., Robert E. Anderson, M.D.,
Ph.D., David G. Birch, Ph.D., Stephen P.
Daiger, Ph.D., Albert O. Edwards, M.D.,
J. Jill Hopkins, M.D.
Retina-Vitreous Associates, Los Angeles, CA
$49,806
Mark E. Pennesi, M.D., Ph.D.
Oregon Health & Science University,
Portland, OR
$65,000
David G. Telander, M.D., Ph.D.
University of California, Davis, CA
$65,000
Wilmer Eye Institute Research Center
for the Study of Retinal Degenerative
Diseases
The Johns Hopkins University School
of Medicine, Baltimore, MD
Peter A. Campochiaro, M.D., Center Director
$456,645
Principal Investigators: Peter A.
Campochiaro, M.D., Nicholas Katsanis,
Ph.D., Nicholas Marsh-Armstrong, Ph.D.,
Jeremy Nathans, M.D., Ph.D., Amir Rattner,
Ph.D., Jennifer U. Sung, M.D., Donald J.
Zack, M.D., Ph.D.
Stephen H. Tsang, M.D., Ph.D.
Edward S. Harkness Eye Institute,
Columbia University Medical Center,
New York, NY
$65,000
RESEARCH FACILITIES
Joe G. Hollyfield, Ph.D.
Pathophysiology Facility for the Study
of Retinal Degenerative Diseases
Cole Eye Institute, Cleveland, OH
$71,251
Arlene V. Drack, M.D.
University of Iowa, Iowa City, IA
$65,000
Edwin M. Stone, M.D., Ph.D.
Carver National Genetic Testing
Laboratory, University of Iowa, Iowa
City, IA
CAREER DEVELOPMENT AWARDS
Career Development Awards support
talented and ambitious clinician-scientists
who are entering the field of retinal
disease research.
Peter J. Francis, M.D., Ph.D.
Portland, OR
$65,000
Michael A. Grassi, M.D., Ph.D.
University of Chicago Medical Center,
Chicago, IL
$65,000
MARJORIE C. ADAMS WOMEN’S
CAREER DEVELOPMENT AWARD
Isabelle Audo, M.D., Ph.D.
Centre Hospitalier National
d’Ophtalmologie des Quatre-Vingts,
Paris, France
$65,000
Ruifang Sui, M.D., Ph.D.
Peking Union Medical College Hospital,
Beijing, China
$65,000
INDIVIDUAL INVESTIGATOR AN D
COLLABORATOR AWARDS
CELL-BASED THERAPY
Constance L. Cepko, Ph.D.
Harvard Medical School, Boston, MA
$100,000
David M. Gamm, M.D., Ph.D.
James A. Thomson, Ph.D.
Eric A. Pierce, M.D., Ph.D.
Raymond D. Lund, Ph.D.
Derek J. Hei, Ph.D.
Oregon Health and Sciences University,
Portland, OR; University of
Pennsylvania, Philadelphia, PA;
Waisman Center, University of Wisconsin,
Madison, WI
Translational Research Acceleration Program
$500,000
COMMUNITY
21
Thomas A. Reh, Ph.D.
University of Washington, Seattle, WA
Translational Research Acceleration
Program
$282,065
Eric A. Pierce, M.D., Ph.D.
Scheie Eye Institute, University of
Pennsylvania School of Medicine,
Philadelphia, PA
$100,000
Thomas A. Reh, Ph.D.
University of Washington, Seattle, WA
$67,129
Ronald Roepman, Ph.D.
Radboud University, Nijmegen Medical
Centre, Netherlands
$99,856
Sarah Tao, Ph.D.
Charles Stark Draper Laboratory,
Cambridge, MA
$99,997
David N. Zacks, M.D., Ph.D.
W.K. Kellogg Eye Center, University of
Michigan, Ann Arbor, MI
$46,530
CELLULAR AND MOLECULAR
MECHANISMS OF DISEASE
Anne L. Calof, Ph.D.
University of California, Irvine, CA
$85,839
Albert O. Edwards, M.D., Ph.D.
Mayo Clinic, Rochester, MN
$87,087
John Heckenlively, M.D.
$36,940
Lizbeth Hedstrom, Ph.D.
Brandeis University, Waltham, MA
$100,000
David Krizaj, Ph.D.
University of Utah, Salt Lake City, UT
$83,560
Yun Z. Le, Ph.D.
University of Oklahoma Health Sciences
Center, Oklahoma City, OK
$100,000
Janis Lem, Ph.D.
Tufts New England Medical Center,
Boston, MA
$77,245
Patsy M. Nishina, Ph.D.
The Jackson Laboratory, Bar Harbor, ME
$100,000
22
Hui Sun, Ph.D.
University of California Los Angeles
School of Medicine, Los Angeles, CA
$74,223
DIAGNOSTIC
Pierre Lachapelle, Ph.D.
McGill University, Montreal, Quebec,
Canada
$41,163
Richard G. Weleber, M.D.
Portland, OR
$50,000
GENE THERAPY
Alberto Auricchio, M.D.
Telethon Institute of Genetics and
Medicine, Naples, Italy
$100,000
Jean Bennett, M.D., Ph.D.
Arkady Lyubarsky, Ph.D.
Thierry Léveillard, Ph.D.
José-Alain Sahel, M.D.
Institute de la Vision-INSERM, Paris,
France; University of Pennsylvania,
Philadelphia, PA
$74,269
Marina S. Gorbatyuk, Ph.D.
$100,000
Miguel C. Seabra, M.D., Ph.D.
Tanya Tolmachova, Ph.D
Imperial College, London, England
$41,430
Debra Thompson, Ph.D.
$41,430
Uwe Wolfrum, Ph.D.
Johannes Gutenberg University of Mainz,
Mainz, Germany
$99,400
Barbara Zangerl, D.V.M., Ph.D.
University of Pennsylvania, School of
Veterinary Medicine, Philadelphia, PA
$120,000
GENETICS
Sara J. Browne, Ph.D.
Stephen P. Daiger, Ph.D.
Lori S. Sullivan, Ph.D.
University of Texas Health Science
Center at Houston, TX
$68,397
Sara J. Browne, Ph.D.
Stephen P. Daiger, Ph.D.
Lori S. Sullivan, Ph.D.
University of Texas Health Science
Center at Houston, TX
$250,000
Anneke I. den Hollander, Ph.D.
Radboud University, Nijmegen Medical
Centre, Nijmegen, Netherlands
$67,617
Qin Liu, Ph.D.
$100,000
William Hauswirth, Ph.D.
$76,474
Patsy M. Nishina, Ph.D.
Bo Chang, M.D.
The Jackson Laboratory, Bar Harbor, ME
$150,000
Alfred S. Lewin, Ph.D.
Marina S. Gorbatyuk, Ph.D.
$86,726
Dror Sharon, Ph.D.
Hadassah-Hebrew University Medical
Center, Jerusalem, Israel
$84,552
Robert Molday, Ph.D.
University of British Columbia,
Vancouver, British Columbia, Canada
$100,000
Edwin M. Stone, M.D., Ph.D.
University of Iowa, Iowa City, IA
$301,025
NEUROPROTECTIVE THERAPY
John D. Ash, Ph.D.
University of Oklahoma, Oklahoma City, OK
$100,000
Nicolas G. Bazan, M.D., Ph.D.
Louisiana State University Health
Sciences Center, New Orleans, LA
$89,964
Craig Beeson, Ph.D.
Bärbel Rohrer, Ph.D.
Medical University of South Carolina,
Charleston, SC
$200,000
William A. Beltran, D.V.M., Ph.D.
$55,131
Jeffrey H. Boatright, Ph.D.
John M. Nickerson, Ph.D.
Emory University Eye Center, Emory
University School of Medicine, Atlanta, GA
$87,061
Michael E. Boulton, Ph.D.
Massoud Motamedi, Ph.D.
University of Texas Medical Branch,
Galveston, TX
$83,671
John G. Flannery, Ph.D.
University of California, Berkeley, CA
$67,941
Stefanie M. Hauck, Ph.D.
Marius Ueffing, Ph.D.
Institute of Human Genetics, GSF-National
Research Center, Neuherberg, Germany
$87,088
Matthew M. LaVail, Ph.D.
University of California, San Francisco,
School of Medicine, San Francisco, CA
$154,469
Thierry Léveillard, Ph.D.
Institute de la Vision-INSERM, Paris, France
$302,339
Bärbel Rohrer, Ph.D.
Medical University of South Carolina,
Charleston, SC
$84,551
Hongjun Song, Ph.D.
Donald J. Zack, M.D., Ph.D.
Wilmer Eye Institute, The Johns Hopkins
University School of Medicine,
Baltimore, MD
$329,170
NUTRITIONAL/ ENVIRONMENTAL
THERAPIES
Paul S. Bernstein, M.D., Ph.D.
Werner Gellermann, Ph.D.
Moran Eye Center, University of Utah,
Salt Lake City, UT
$50,731
OTHER FFB FY09 GRANTS AND
MEETING/CONFERENCE SUPPORT
Robert E. Anderson, M.D., Ph.D.
University of Oklahoma Health Sciences
Center, Oklahoma City, OK
$15,000
FFB AWARDS
BOARD OF DIRECTORS RETINAL
DEGENERATION RESEARCH AWARD
Awarded to multiple investigators from
The Children's Hospital of Philadelphia;
Telethon Institute of Genetics and
Medicine, Naples, Italy; University
College London; Moorfields Eye Hospital,
London; University of Pennsylvania;
University of Florida; and Second
University of Naples, Italy for their
work in RPE65 gene therapy.
LLURA LIGGETT GUND LIFETIME
ACHIEVEMENT AWARD
Dean Bok, Ph.D.
NATIONAL NEUROVISION
RESEARCH INSTITUTE FY09
GRANTS AWARDED
CLINICAL ASSESSMENT CENTERS
Richard G. Weleber, M.D.
Portland, OR
$176,613
NATIONAL EYE EVALUATION RESEARCH
NETWORK CLINICAL TREATMENT AND
EVALUATION CENTERS
Paul S. Bernstein, M.D., Ph.D.
University of Utah, Salt Lake City, UT
William Freeman, M.D.
University of California, San Diego, CA
Albert M. Maguire, M.D.
Donald J. Zack, M.D., Ph.D.
The Johns Hopkins University,
Baltimore, MD
Marco A. Zarbin, M.D., Ph.D.
University of Medicine and Dentistry of
New Jersey, Newark, NJ
PRE-CLINICAL ASSESSMENT
CENTERS
Peter A. Campochiaro, M.D.
Wilmer Eye Institute, The Johns Hopkins
University School of Medicine,
Baltimore, MD
$60,000
Theo van Veen, Ph.D.
Wallenberg Retina Center, University
Hospital of Lund, Lund, Sweden
$60,000
Rong Wen, M.D., Ph.D.
Bascom Palmer Eye Institute of Miami,
Miami, FL
$60,000
GENE THERAPY FOR USHER 1B
$541,510
Tomas S. Aleman, M.D.,
Artur V. Cideciyan, Ph.D.
Samuel G. Jacobson, M.D., Ph.D.
Scheie Eye Institute, University of
Pennsylvania, Philadelphia, PA
Translational Research Acceleration
Program
David S. Williams, Ph.D.
Jules Stein Eye Institute, University of
California, Los Angeles, CA
MEETINGS AND WORKSHOPS
Christina Clark
Foundation for Interdisciplinary Motor
Neuron Medicine, Metamora, MI
Adaptive Clinical Trial Designs
$10,000
COMMUNITY
23
A Message from
our Treasurer
I am pleased to present the FY 2009 Statement
of Activities and Financial Position for the
Foundation Fighting Blindness. The economic
downturn over the past year posed challenges
for the Foundation, but due to the strong
commitment of our donor base and timely
organizational adjustments made by our
leadership, we were able to minimize the
impact. Revenue in FY 2009 was down only
13% from FY 2008.
Throughout FY 2009, we worked diligently
to minimize our revenue shortfall’s impact on
the investment in our core mission. As a result,
we were able to invest over $19 million in
research and public health information,
down only 7% from the FY 2008 amount.
Notwithstanding the economy, we were able
to increase event revenues by 4%, which
reflects strong support for our mission at
the grassroots level.
As the Foundation moves into FY 2010,
we remain keenly focused on maximizing our
investment in vision-saving research. Caution
is warranted given the dramatic economic
24
changes over the past year, but we are
optimistic about our ability to maintain and
potentially increase our total revenues. The
Foundation appreciates the unwavering
commitment of its supporters throughout the
past year. Thanks to our donors and dedicated
researchers, the future remains bright for
sight-saving treatments and cures.
Our complete financial statements were
audited by Raffa, P.C., independent certified
public accountants. A complete copy of our
audited financial statements is available upon
request from the Foundation Fighting
Blindness, 11435 Cronhill Drive, Owings Mills,
MD 21117, or at www.FightBlindness.org.
Sincerely,
Haynes P. Lea
Vice President and Treasurer
Statement of Activities
Revenue and Support
Contributions
Special events, net of direct
Bequests
Other revenue
Total Revenue
Expenses
Research
Public Health Information
Management
Fundraising
Total Expenses
Total change in net assets
2009
$
$
$
17,297,000
6,782,000
2,939,000
1,401,000
28,419,000
16,519,000
2,862,000
1,889,000
8,153,000
29,423,000
$ (1,004,000)
Statement of Financial Position
Assets
Cash and investments
Pledges receivable, net
Other assets
Trusts and other funds
Fixed assets, net
Total Assets
Liabilities
Accounts payable and accrued liabilities
Research grants payable
Deferred revenues
Liabilities under trusts and other funds
Total liabilities
Net Assets
Unrestricted net assets
Board designated net assets
Temporarily restricted net assets
Permanently restricted net assets
Total net assets
Total liabilities and net assets
$
$
16,613,000
7,611,000
950,000
6,421,000
1,193,000
32,788,000
$
957,000
12,078,000
135,000
986,000
14,156,000
$
1,193,000
2,223,000
14,716,000
500,000
18,632,000
32,788,000
$
COMMUNITY
25
Board of Directors
Gordon Gund
Chairman
Jeremiah H. Shaw, Sr.
Vice Chairman
Edward H. Gollob
President
Joel P. Davis
Senior Vice President
David B. Brint
Vice President
Haynes P. Lea
Vice President & Treasurer
Yvonne E. Chester
Secretary
Gregory A. Austin
Daniel G. Bergstein
Marilyn Green
Howard Hirsch
Alan R. Kahn
Edward C. McNally
James P. McNiel
Nancy Mendelow
Karen Petrou
Ken Rietz
Edward Russnow
Bruce P. Sawyer
Deborah Shaw
Moira Shea
Joel Stone
George G. Villere
David G. Walsh
Theodore M. Welp
26
National Trustees
Clifford B. Aaron
David T. Alexander
Terry Pink Alexander
Pamela J. Allen
Steven D. Alper
Norman Barkeley
Michele A. Molloy-Barnett
Stephen C. Barnett
Jordan S. Bergstein
Beverly Berman
Thomas L. Bernardin
Joseph Bier
Denice F. Brown
Steven D. Browne
Scott W. Burt
Melissa Campbell, M.D.
William E. Carty
William J. Chatlos
Robert D. Cleveland
Christopher Coleman
Joan E. Crowley
Peter J. Crowley
Thomas W. Curley
Glen Davidson
Daniel P. Day
Steven Dezii
Ralph L. Donnelly
Cynthia Elden
Richard Elden
David Finkelstein
Harriet L. Finkelstein
William Fischer
Daniel Freedman
Edward L. Goldberg
Ramon Gomez
Dean Green
Bruce Grieve
Lara Gund
Llura Gund
Lawrence S. Halperin, M.D.
Loretta Hoffelder
Charlotte Isen
Leslie James
William F. James, Jr.
Tracy E. Johns
Thomas A. Jones
Alan B. Landis
Linda Lechner
Nathan Light
William Link, Ph.D.
Stephen A. Mack
Ronald E. Massman
Beatrice C. Mayer
William McCaughey
Wren McNiel
Sean Moynihan
Jacob A. Myers
Harry P. Oakes
Igor Olenicoff
Louis D. Posen
Walter Raineri
Mitch Reiter
John Saclarides
Melville R. Sahyun, Ph.D.
Ira Schulman
M. Rose Shane
Stanley Shapiro
Jonathan S. Steinberg, M.D.
Barbara Stone
Evan Stone
Jill Stone
Michael Stone
Steffen Suchert
Frank Trainor
Meredith Tyree
Lamar Villere
Elaine Welp
Peter Whinfrey
Jack Wiedmer
John M. Wilson, Jr.
William Woodall
Stephen A. Wynn
Roy Timothy Young
Trustees Emeritus
Alexander Yankelove
Scientific Advisory Board
Eric Pierce, M.D., Ph.D.
Chairman
Stephen Daiger, Ph.D.
Alan Laties, M.D.
Richard Weleber, M.D.
Marco Zarbin, M.D., Ph.D.
Vice-Chairmen
Gustavo Aguirre, V.M.D., Ph.D.
Robert Anderson, M.D., Ph.D.
John Ash, Ph.D.
Radha Ayyagari, Ph.D.
Jean Bennett, M.D., Ph.D.
Paul Bernstein, M.D., Ph.D.
Eliot Berson, M.D.
David Birch, Ph.D.
Dean Bok, Ph.D.
Eugene de Juan, Jr., M.D.
Lucian Del Priore, M.D., Ph.D.
John Dowling, Ph.D.
Deborah Farber, Ph.D.
Gerald Fishman, M.D.
John Flannery, Ph.D.
Morton Goldberg, M.D.
Gregory Hageman, Ph.D.
Joe Hollyfield, Ph.D.
Leslie Hyman, Ph.D.
Alessandro Iannaccone, M.D., M.S.
Samuel Jacobson, M.D., Ph.D.
William Kimberling, Ph.D.
Matthew LaVail, Ph.D.
Vincent Lee, Ph.D.
Tiansen Li, Ph.D.
Roderick McInnes, M.D., Ph.D.
Jeremy Nathans, M.D., Ph.D.
Gary Novack, Ph.D.
Thomas Reh, Ph.D.
Catherine Bowes Rickman, Ph.D.
Johanna Seddon, M.D., Sc.M.
Edwin Stone, M.D., Ph.D.
Douglas Vollrath, M.D., Ph.D.
Andreas Wenzel, Ph.D.
David Williams, Ph.D.
Michael Young, Ph.D.
Donald Zack, M.D., Ph.D.
Chief Staff
Regional Development Offices
William T. Schmidt
Chief Executive Officer
Greater New York Region
Louise & Lansdale Boardman Center
212-244-1470
James W. Minow
Chief Development Officer
Stephen M. Rose, Ph.D.
Chief Research Officer
Annette Hinkle, CPA
Chief Financial Officer
Patricia A. Dudley
Chief Human Resource Officer
Steven Bramer, Ph.D.
Chief Drug Development Officer
Mid-Atlantic Region
410-568-0150
Southern Region
919-781-8014
Florida Region
954-308-5555
Midwest Region
847-680-0100
Texas Region
214-872-2907
Management Staff
Rocky Mountain Region
303-799-1501
Susan Brumley
Senior National Director, Chapters and
Major Gifts
Northern California Region
408-202-3801
Lorraine Hirsch, CPA
Controller
Southern California Region
310-207-2089
Elizabeth McKenna, Ph.D.
Director, Science/Research
Communications
Michele Mercer
Senior Director, Database Operations
Timothy Schoen, Ph.D.
Director, Science and Preclinical
Development
Anastasia Staten
Director of Membership
Angela Vasquez
Director, Marketing and Communications
Kristin White
Senior National Director, Events
COMMUNITY
27
Chapters
Northeast Region
Boston
Lynn Donnelly
President
Southern Region
Atlanta
Tom Curley
President
Cincinnati/
Northern Kentucky
Tim Smith
President
Long Island
Wren McNiel
Karen Montagnese
Co-Presidents
Charlotte
Pamela Allen
President
Cleveland
Greg Dubecky
President
New York City
Sherry Rogers
Key Volunteer
Memphis
J. David Spiceland
Charlene Spiceland
Co-Presidents
Columbus
Bridget McAuliffe
President
Western Region
Las Vegas
Lee Weiss
President
Northern New Jersey
Matthew Lardieri
Key Volunteer
Nashville
Joann Reid
President
Eastern Michigan
Michael Parks
President
Los Angeles
Caroline Saltzman
President
Princeton
Llura Gund
President
Raleigh Durham
Ed Summers
President
Fort Wayne
Rick Dahlstrom
President
Orange County
Dean Gavello
President
Westchester-Fairfield
Debi Mittman
President
Florida Region
Fort Lauderdale
Jack Nudel, M.D.
President
Indianapolis
Ashley DePrez
President
Phoenix
Jacque Olsen
President
Kansas City
Terry Super
President
Portland
Amy Murphy
President
Milwaukee
Bunny Jordan
President
Sacramento
Judith Leach
Key Volunteer
Minneapolis/
Northern Lights
Julie Anderson
President
Salt Lake City
James Huber
President
Mid-Atlantic Region
Baltimore
Lu Ann and Jay H.
Blackman
Co-Presidents
Montgomery County, MD
Donna Burke Tehaan
President
Philadelphia
Phyllis Greco
President
Pittsburgh
Cindy Taliani
President
Northern Virginia
Bill Carty
President
Richmond
John Tragesar
President
28
Jacksonville
Suzi Ford
President
Orlando
Dan Day
President
Southwest Florida
Sally VanBuskirk
President
Tampa
April Lufriu
President
Midwest Region
Chicago
Juergen Huellen
Vice President,
Fundraising
St. Louis
Jack Wiedmer
President
Texas & Rocky
Mountain Regions
Dallas/Ft. Worth
Todd Chartier
President
Denver
Drew McLean
President
Houston
Dorothy Balandis
President
San Antonio/Austin
Jeanette Skinner
President
San Diego
Jody Tadder
President
San Francisco/East Bay
Henry and Sandra Wong
Co-Presidents
Silicon Valley
William Huber
President
To contact a specific chapter,
call the appropriate regional
office listed on page 27, or visit
www.FightBlindness.org.
JOINING the FIGHT
A successful community is defined by the strength of its relationships.
At the Foundation Fighting Blindness, there is no relationship more
important than the one with our members. It is what binds us
together and moves our mission forward. And, as treatments for
retinal diseases become available, it is that relationship that will
transform the lives of people living in darkness.
Today, more than 10 million Americans are losing
their vision to retinal diseases such as macular
degeneration, retinitis pigmentosa, Stargardt
disease, and Usher syndrome. By 2020, that number
is expected to increase by 50 percent, making
blindness one of the most urgent health issues of
our time.
Since our founding in 1971, the Foundation
Fighting Blindness has raised over $370 million in
the fight against these devastating conditions.
Thanks to the dedication and collaboration of our
members, Foundation researchers are making
monumental advancements.
But we must keep up the momentum in retinal
research, and we need the sustained support of our
dedicated members to do it. The Foundation
Fighting Blindness provides a number of ways to
give including:
G I FTS
Cash gifts are a great way to advance the
Foundation’s mission. Donate online quickly and
securely at www.FightBlindness.org or call
800-683-5555. The Foundation also welcomes gifts
of stock, personal property and real estate. Checks
can be mailed to P.O. Box 17279, Baltimore, MD
21203-7279. Gifts can also be made in tribute to
friends and loved ones.
PLAN N E D G IVING
Planned giving is an important way for you to
financially plan today to make a substantial gift to
the Foundation, either now or in the future. Typical
planned gifts include bequests, trusts, and gift
annuities. To receive information about any of our
planned giving programs, call 800-683-5555.
EVENTS
Every year, thousands of people participate in
fundraising events benefitting the Foundation
including VisionWalk, Visionary Awards Dinners,
golf tournaments, wine tastings, and other local
fundraising activities. Find events in your area by
visiting www.FightBlindness.org.
VOLU NTE ERING
An individual’s talents and professional associations
can be enormously beneficial to the Foundation –
in both leadership and supporting roles. To learn
more about volunteer opportunities in your
community call 800-683-5555.
The Foundation Fighting Blindness is approved by
the Office of Personnel Management for participation
in the Combined Federal Campaign (#11721).
Contributions to the Foundation are tax deductible
to the full extent of the law.
Cert no. SW-COC-002370
Foundation Fighting Blindness
11435 Cronhill Drive
Owings Mills, Maryland 21117-2220
410-568-0150
800-683-5555
410-363-2393 fax
www.FightBlindness.org
© 2009 Foundation Fighting Blindness
c4

2009 Annual Report - Foundation Fighting Blindness

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