2013 Annual Report - Plaintext Version

Momentum
Foundation Fighting Blindness Annual Report 2013

A Message from the Chairman and the CEO

P=mv. That’s the mathematical equation for momentum. The “p” is for Greek and Latin words indicating movement, the “m” and “v” mass and velocity. So, momentum is equal to mass x velocity. In other words, the bigger you are and the faster you’re moving, the more momentum you gain. Unless, that is, something slows you down.

Now in its 42nd year, the Foundation Fighting Blindness is a national organization with roughly 50 chapters and more than 130,000 active donors and volunteers across the country. The Foundation’s reach is global, and it has a revenue history of almost $550 million. That’s quite a bit of mass. As for velocity, this past decade’s technological and scientific advancements have helped us accelerate drug, gene and cell-based therapies into pre-clinical and clinical trials that were unimaginable at the turn of the 21st century.

Fiscal year 2013 continued to drive that momentum. For the second year in a row, we invested more than $20 million into research and public health education projects while growing our fundraising and membership programs and launching a major-gifts campaign. (More on this to follow.)

This year’s progress wouldn’t have been possible were it not for growing momentum on a variety of fronts. Gene identification as well as drug and gene therapy development are moving at breakneck paces, compared to 10 years ago. Just as impressive is recent progress in a field the Foundation’s been behind since its inception: stem cell research. In “Beating the Curve” (pg. 2), Dr. David Gamm, a Foundation-funded clinician-researcher, explains why cell-based therapies are so promising and how a project he’s leading could restore sight to those affected by a variety of retinal diseases.

Our grassroots efforts — chapter and dinner events, 5K VisionWalks and other activities — continue to fuel fundraising and awareness-building nationwide.

One reason is that, in each FFB chapter, take-charge members are inspiring others to up their games. “It’s Never Too Late” (pg. 4) spotlights Martha Steele,

a Boston-area resident whose work in 2013 (and previous years) with the local chapter and VisionWalk exemplifies optimal grassroots advocacy.

There’s much more to share from fiscal year 2013, as you’ll see. But before you dive into this report’s pages, we want to offer you a glimpse of the Foundation’s future — Envision 20/20: The Campaign to End Blindness, a campaign to ensure we continue to grow our momentum. Launched this year, the campaign aims to raise $300 million by 2020. As FFB’s first initiative of this magnitude, The Campaign to End Blindness is truly a means to an end. Thanks to the sustained momentum built by you, our dedicated donors and volunteers, now is the time to end blindness. We look forward to updating you on this campaign in the coming months and years.

Until then, we thank you for an extraordinary year and invite you to dive into the details of this report.

Sincerely,

Gordon Gund

Chairman and Co-Founder

William T. Schmidt

Chief Executive Officer

Beating the Curve

Growth in technology and intellectual capital has made cell-based therapies a potent weapon in the fight against blindness.

“When I think of stem-cell-based therapies and technology, the word ‘momentum’ is paramount. In many ways, we’ve beaten the curve to this point.”

That’s Dr. David Gamm, a clinician-researcher whose career began not long after Dr. James Thomson, a colleague at the University of Wisconsin, discovered a way to grow human embryonic stem cells — cells that can be coaxed into becoming any kind of human tissue — in 1998. Several years later, Dr. Thomson derived what are called induced pluripotent stem cells, or iPS cells, from adult blood. Now, with Foundation funding, he, Dr. Gamm and others are hard at work turning iPS cells into potentially vision restoring retinal cells.

There are two reasons for this turn of events. “One, scientific technology has grown exponentially, with sophisticated techniques and concepts evolving,” Dr.Gamm, M.D., Ph.D, explains. “And, two, very talented individuals are entering the field.” The Foundation, he adds, is a leader in facilitating stem cell research targeting retinal diseases. “That’s part of its history — identifying promising areas and getting in right off the bat, so it can initiate and maintain momentum.”

In 2013, the Foundation awarded Dr. Gamm and his team $900,000 to develop a “retinal patch,” a two-layered set of stem cells designed to replace two types of cells damaged by various retinal diseases — photoreceptors and retinal pigment epithelial (RPE) cells. Says Dr. Gamm: “The analogy I like to use is, if your car doesn’t run and you don’t have pistons or a carburetor, putting just a carburetor or pistons back in isn’t going to get it to run. You need both.”

Fixing a retina, however, isn’t as simple. In stem cell research, there are three broad areas of momentum at present, according to Dr. Gamm: cell manufacture, cell installation and therapy evaluation. The first is farthest along, with RPE, in particular, “a relatively easy cell type to grow,” he says. But mixing RPE cells with photoreceptors, then installing them in the retina “and having them survive, make the right connections and continue to function — a lot of work needs to be done.” And evaluation comes into play only after installation.

Thankfully, many labs worldwide are working hard on the installation challenge, with each one learning from the others. Dr. Gamm expects major advancements within the next 10 years.

Another notable area of stem cell research receiving Foundation funding is disease modeling. Because iPS cells are derived from skin or blood, “samples from people affected by retinal diseases are sent to us,” Dr. Gamm explains. iPS cells are then created, directed to turn into retinal cells and placed in a dish, where they’re tested with various treatments. Only those that work will be shuttled toward clinical trials. “So instead of just shooting from the hip,” Dr. Gamm says, “we can customize therapies based on the actual dysfunctions that are going on at the cellular level.”

With so many stem cell options, Dr. Gamm is reminded of the Foundation’s “diversified portfolio” approach to fighting blindness — one featuring not just stem cell, but gene and drug therapies too. “The Foundation,” he says, “does a great job applying the right amount of emphasis to different fields and identifying new ones.”

It’s Never too Late

Diagnosed with Usher syndrome decades ago, Martha Steele didn’t join FFB until 2008. But she’s been making up for lost time.

Martha Steele is a scientist, a trained toxicologist whose job as deputy director for the Bureau of Environmental Health at the Massachusetts Department of Public Health has her overseeing everything from food-poisoning cases to environmental investigations of nuclear power plants.

The 61-year-old also has Usher syndrome, which causes hearing and vision loss. So it took scientific evidence — presented at a Vision Seminar in Boston five years ago — to convince her the time had come to adopt the Foundation’s mission as her own.

And, indeed, she has. “Martha has reinvigorated the Boston region by focusing not just on the city but its suburbs as well,” says Maria Costa, FFB’s director of development for the northeast region. “She’s hosted a chapter speaker series presentation and developed a new networking group in Arlington. It’s a great example of what’s happening nationwide — people affected by retinal diseases taking charge and encouraging others to either become involved or get more involved.”

Martha admits that, before the seminar, “I hadn’t been following the research. But there was clearly a lot of excitement from the researchers talking about gene, drug and stem cell therapies and upcoming clinical trials. So that led me, initially, to get involved with the Foundation through VisionWalk.”

This year, she chaired the Boston VisionWalk for the fourth year in a row. And her team, Strides for Eagle Eyes, brought its grand total, over five walks, to $120,000. As the Boston Chapter’s president, she has also reinstituted the region’s speaker series – meetings featuring local research and low vision specialists. She began in February with a presentation by Dr. Eric Pierce, who is associate director of the Foundation-funded Berman-Gund Lab for the Study of Retinal Degenerations at Harvard University. “That was on a week night, and it was jammed, with more than 100 people,” Martha recalls.

Other speaking events are scheduled for the fall and winter, as are monthly networking group meetings at a local public library. “We had our first one in July,” Martha says. “It’s a way to reach out to those affected, and keep them informed about research and support them. We meet if it’s just one person or 16. I want people to know these group meetings won’t go away.”

So why the momentum now, even though Martha, who began wearing hearing aids at age 5, was diagnosed with Usher syndrome 30-odd years ago? The answer, in part, is technology. Over the past several years, Martha’s vision has deteriorated considerably, preventing her from lip-reading, once her principal means of “hearing.” A few years ago, however, Cochlear implants changed all that, as did a recent stint at The Carroll Center for the Blind, where she trained in state-of-the-art visual strategies.

Martha’s also been energized by the response to her annual VisionWalk appeals. Working with a list of roughly 500 connections, ranging from childhood friends to people with whom she does business, she sends out a letter sharing the vision loss she experienced over the previous year.

“The bottom line,” she says, “is people are donating I think not so much to FFB as they are to support me.” But it’s the Foundation’s work that motivates Martha, who was recently elected an FFB National Trustee. “I’m impressed with the breadth of research projects in clinical trials right now,” she says. “I don’t think anything big will happen next year or the year after. But within the next decade, it will.”

2013 Momentous Milestones

It’s been a banner year for the Foundation and retinal research, so highlighting the successes is a real challenge. But seeing as we’re reviewing fiscal year 2013, here are the Foundation’s top 13 milestones in research, fundraising and public awareness.

  1. First "bionic retina" becomes available. The Food and Drug Administration granted market approval for the Argus II retinal prosthesis, the first device of its kind available in the U.S. that can restore some vision to people blind from advanced retinitis pigmentosa.
  2. Gene therapy for LCA closer to FDA approval. The landmark gene therapy study that restored significant vision in patients with Leber congenital amaurosis (LCA) has advanced to a Phase III clinical trial — one step closer to FDA market approval. In addition, more than 150 people have received gene therapy in studies underway for retinitis pigmentosa, choroideremia, Stargardt disease, Usher syndrome and macular degeneration.
  3. New Stargardt disease study launched. The Foundation’s Clinical ResearchInstitute started a natural historystudy of people affected by Stargardtdisease, called ProgSTAR, to helpresearchers gain a better understandingof the condition and to develop optimaloutcome measures for forthcomingclinical trials.
  4. Promise in stem cell research. The first-ever stem cell clinical trialtargeting retinitis pigmentosa is poisedto begin in 2014, aiming to rescuephotoreceptor cells and preserve vision.
  5. Seed money blooms. Thanks to early Foundation support, twostart-up biotech companies developinggene therapies for retinal diseasesattracted nearly $40 million dollars eachin venture capital funding to help movethe treatments forward. Applied GeneticTechnologies Corporation (AGTC) istargeting achromatopsia and X-linkedretinoschisis, and GenSight Biologics istargeting retinitis pigmentosa.
     
  6. A powerful partnership. The Foundation launched a nationalcampaign with Walmart called SaveYour Vision Month, engaging theretailer’s associates in volunteerismthat led to $1.2 million in grant moneyfrom the Walmart Foundation.
     
  7. Fundraisers flourish. The Foundation’s 18 Visionary Awardsdinners generated more than $5.3 millionfor blindness research, engaging notablehonorees, including NFL Star StevenJackson, NASCAR legend RichardChildress, fashion icon Jonathan Adlerand former Secretary of Labor AnnMcLaughlin Korologos.
  8. Footsteps with a purpose. VisionWalk, the Foundation’s signature5K fundraising program, surpassed the$28 million mark, with more than 50annual walkathons engaging 100,000people in the fight against blindness todate, since 2006.
  9. Maximizing social buzz. The Foundation’s social media presenceexpanded, with a Facebook followingthat grew by 6,000, to more than 17,000fans. Twitter followers increased tomore than 4,500, and the Eye onthe Cure blog celebrated one year ofcompelling posts.
     
  10. A record-breaking conference. More than 600 attendees convergedat the Foundation’s national conference,VISIONS 2013, for four days ofnetworking, informative sessions andvolunteer leadership training.
     
  11. Power of the PSA. Radio public service announcements(PSAs) raising awareness about theFoundation and age-related maculardegeneration aired on more than250 radio stations across the country.And print PSAs appeared in nationalpublications, including The Wall StreetJournal, AARP The Magazine,AARP Bulletin and Forbes magazine,reaching millions.
     
  12. Reaching patients in need. More than 5,000 patients receivedfree disease information from FFB.And nearly 1,500 people attended aFoundation Vision Seminar, hearingdirectly from top-notch retinal andlow vision specialists about the latestresearch advances.
     
  13. Grassroots momentum. The Foundation’s 47 chapters heldcountless fundraising, support,education and awareness events in theircommunities. Among the offerings werecoffee socials, golf tournaments, winetastings, speaker seminars and museumtrips — a little something for everyone.

A Message from Our Treasurer

We are pleased to present the Statement of Activities and Financial Position for the Foundation Fighting Blindness’ fiscal year that ended June 30, 2013.

It was a very productive year, as the Foundation raised $44.7 million, its highest amount in revenues ever. This result continues the financial momentum we’ve built these past several years. It also brings the total earned by the Foundation since its inception in 1971 to almost $550 million.

Speaking of momentum, for the second consecutive year, the Foundation spent more than $20 million on research and public health education. We focused intently on awarding grants to a variety of promising projects, ranging from lab studies to pre-clinical and clinical trials.

Worth noting this year is a jump in special events revenues, from $8.7 million to $10.4 million, due largely to Walmart’s Save Your Vision Month program. The campaign, in which Walmart associates secured grants from the Walmart Foundation by participating in eye-health- awareness activities, garnered FFB $1.2 million.

Federal funding also increased, from $2 million to $4 million, with the launch of ProgSTAR, our Stargardt disease natural history study. The two-year study will involve 250 participants at nine sites worldwide, all focused on disease and vision loss progression so that researchers can best measure the outcomes of emerging therapies in clinical trials.

The launch of ProgSTAR, which promises long-term benefits, is just one example of the Foundation’s crucial work. Thanks to our support, researchers worldwide are ushering potential treatments and cures toward clinical trials, where their safety, efficacy and suitability for the marketplace will be determined.

The process of taking cures and treatments from the laboratory to the patient is extremely costly yet necessary. The closer we move therapies to the marketplace, the more we must continue to build our momentum for increasing revenues. A daunting task, yes, but one in which the Foundation — backed by dedicated staff members, volunteers and donors — has proven itself very capable. Eventually, these therapies will provide sight for millions of people worldwide.

Sincerely,

Haynes P. Lea

Treasurer

2013 Research Grants

In steadfast pursuit of its mission to find preventions, treatments and cures for the entire spectrum of inherited retinal degenerative diseases, the Foundation Fighting Blindness funds a diverse research portfolio that focuses on six priority areas: genetics, gene therapy, cellular mechanisms of diseases, clinical-structure and function relationships, novel medical therapy and regenerative medicine.

In fiscal year 2013, the Foundation and its Clinical Research Institute provided $17.5 million in support of 119 grants, including those for 13 collaborative research centers. The funded research projects are being conducted by 183 research investigators at 110 institutions, eye hospitals and universities within the United States and abroad, including laboratories in England, France, Germany, Italy, Israel, China and the Netherlands.

  • Research Center grants totaled $4.8 million
  • Individual Investigator Research grants totaled $7 million
  • Alan Laties Career Development Program grants totaled $732,396
  • FFB Clinical Research Institute clinical studies and grants totaled $5 million

Read grant descriptions here. A complete copy of our audited financial statements is available upon request from the Foundation Fighting Blindness, 7168 Columbia Gateway Dr., Suite 100, Columbia, MD 21046.

 

Statement of Activities 2013

REVENUE AND SUPPORT

Contributions 27,914,000

Special events, net of direct 10,379,000

Bequests 1,972,000

Other revenue 4,489,000

Total revenue $44,754,000

 

EXPENSES

Research 17,502,000

Public Health Information 2,507,000

Management 2,271,000

Fundraising 7,613,000

Total Expenses $29,893,000

 

Change in unrestricted net assets 2,646,000

Change in restricted net assets 12,215,000

Total change in net assets $14,861,000

 

Statement of Financial Position

ASSETS

Cash and investments 58,076,000>

Pledges receivable, net 5,186,000

Other assets 2,469,000

Trusts and other funds 6,925,000

Fixed assets, net 2,502,000

Total Assets $75,158,000

 

LIABILITIES

Accounts payable and accrued liabilities 2,529,000

Research grants payable 12,960,000

Deferred revenues 229,000

Liabilities under trusts and other funds 1,138,000

Total Liabilities $16,856,000

 

NET ASSETS

Unrestricted net assets 3,569,000

Board designated net assets 3,800,000

Temporarily restricted net assets 50,433,000

Permanently restricted net assets 500,000

Total net assets $58,302,000

Total liabilities and net assets $75,158,000

Board of Directors

Gordon Gund

Chairman

Jeremiah H. Shaw

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

Steven D. Alper

Ed Babin

Daniel G. Bergstein

Jason Ferreira

Marilyn Green

James P. McNiel

Nancy Mendelow

Evan Mittman

Karen Petrou

Nancy Pollak

Edward Russnow

Bruce P. Sawyer

Moira Shea

Jonathan S. Steinberg, M.D.

Maryrose Sylvester

Warren Thaler

George G. Villere

David G. Walsh

 

National Trustees

David T. Alexander

Terry Pink Alexander

Pamela J. Allen

Julie Anderson

Gregory A. Austin

Pam Babin

Hal Barron, M. D.

Jordan S. Bergstein

Beverly Berman
Thomas L. Bernardin

Joseph Bier

Jay Blackman

Lu Ann Blackman

Aryeh Bourkoff

Elisabeth Bradley

Denice F. Brown

Steven D. Browne

Donna Burke Tehaan

Scott W. Burt

Melissa Campbell, M.D.

Patricia Campbell-Stichweh

Mindy Caplan

William E. Carty

William J. Chatlos

Robert D. Cleveland

Alice Cohen, M.D.

Christopher Coleman

Joan E. Crowley

Peter J. Crowley

Thomas W. Curley

Glen Davidson

Daniel P. Day

David Detrisac, M.D.

Steven Dezii

Ralph L. Donnelly

Jennifer Ferreira

David Finkelstein

Harriet Finkelstein

William Fischer

Ramon Gomez

Dean Green

Bruce Grieve

Grant Gund

Lara Gund

Llura Gund

Zack Gund

Ebby Halliday Acers

Lawrence S. Halperin, M.D.

Steve Hamby

Howard Hirsch

Loretta Hoffelder

S. Roger Horchow

Charlotte Isen

William F. James Jr.

Tracy E. Johns

Thomas A. Jones

Joe Kahl

Judy Kahl

Alan R. Kahn

Anne Katcher

Gary Katcher

Mitch Katcher

Jody Kelly

Gil Kliman, M.D.

Ann Korologos

Louis Kreisberg

Sherri Kroonenberg

Alan B. Landis

Elizabeth Lea

Abigail LeBlanc

Linda Lechner

Janice Lehrer-Stein

Nathan Light

William Link, Ph.D

Davida Luehrs

April Lufriu

Stephen A. Mack

Kamal Majeed, Ph.D.

Bradford Manning

Ronald E. Massman

James Mattox

Reston Mattox

Beatrice C. Mayer

William McCaughey

Edward C. McNally

Wren McNiel

Debi Mittman

Robert Morris

Jason Morris

Jill Morris

Leslie Morris

Sean Moynihan

John Mozeliak

Jacob A. Myers

Jack Nudel, M.D.

Pat O’Callaghan, Sr.

Harry P. Oakes

Igor Olenicoff

Dale Pollak

Louis D. Posen

Noah Rabinsky

Walter Raineri

Mitch Reiter

Ken Rietz

John Saclarides

Melville R. Sahyun, Ph.D.

Ira Schulman

M. Rose Shane

Deborah Shaw

Iris Spiegel

Reuven Spiegel

Alan Spiro

Martha Steele

Barbara Stone

Evan Stone

Jill Stone

Joel Stone

Michael Stone

Steffen Suchert

Frank Trainor

Meredith Tyree

Mark Valenziano

Michelle Veloce

Lamar Villere

Elaine Welp

Theodore M. Welp

Peter Whinfrey

John M. Wilson, Jr.

William Woodall

Stephen A. Wynn

Roy Timothy Young

Chapter Leaders

Julie Anderson
Minneapolis Northern Lights Chapter

Heather Brandon
Columbus Chapter

Donna Burke Tehaan
Montgomery County Chapter

Mindy Caplan
Baltimore Chapter

Carley Colton
Houston Chapter

Rick Dahlstrom
Fort Wayne Chapter

Daniel Day
Orlando Chapter

Greg Dubecky
Cleveland Chapter

Meredith Dunn
San Antonio/Austin Chapter

Todd Dunn
San Antonio/Austin Chapter

Greg Dutton
Louisville Chapter

Vickie Essner
Las Vegas Chapter

Llura Gund
Princeton Chapter

William Huber
Bay Area Chapter

Gil Iames
Indianapolis Chapter

Alessandro Iannaccone
Memphis Chapter

Bunny Jordan
Wisconsin Chapter

Julie Kusku
Eastern Michigan Chapter

Byron Ladd
Richmond Chapter

Kristy Lee
Raleigh-Durham Chapter

Davida Luehrs
Northern Virginia Chapter

April Lufriu
Tampa Bay Chapter

Patrick Maclsaac
Charlotte Chapter

Debi Mittman
Westchester-Fairfield Chapter

Barbara Moffatt
Philadelphia Chapter

Jason Morris
St. Louis Chapter

Jacquelyn Olsen
Arizona Chapter

Angel Ortiz
Sacramento Chapter

Lisa Pleasants
Jacksonville Chapter

Gail Plourde
Portland, Maine Chapter

Mark Plourde
Portland, Maine Chapter

Ed Plumacher
Long Island Chapter

Marie Raquet
Philadelphia Chapter

Sherry Rogers
New York City Chapter

Thomas Serrin
Greensboro Chapter

Tim Smith
Cincinnati/Northern Kentucky Chapter

Gina Smith
Birmingham Chapter

Scott Smith
Birmingham Chapter

Martha Steele
Boston Chapter

Terry Super
Kansas City Chapter

Carmen Swick
Denver Chapter

Jody Tadder
San Diego Chapter

Cindy Taliani
Pittsburgh Chapter

James Vacheenas
Atlanta Chapter

Thomas Weber
Chicago Chapter

Randyce Wechter
Orange County Chapter

Henry Wong
Bay Area Chapter

Sandra Wong
Bay Area Chapter

Staff Leaders
William T. Schmidt
Chief Executive Officer

James W. Minow
Chief Development Officer

Stephen Rose, Ph.D.
Chief Research Officer

Annette Hinkle, CPA
Chief Financial Officer

Patricia Dudley
Chief Human Resources Officer

Patricia Zilliox, Ph.D.
Chief Drug Development Officer