[PDF] At the center of the cause for a cure. Cure in Mind. Cure in Sight.

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Moving Forward.

At the center of the cause for a cure.

Cure in Mind. Cure in Sight.

Alzheimer’s Disease | Macular Degeneration | Glaucoma

Contents Leadership Letter ___________________2 Alzheimer’s Disease Research ________3 Macular Degeneration Research _____ 7 National Glaucoma Research _______ 11 Public Information _________________ 14 Contributing to BrightFocus ________ 15 Ways to Give ______________________ 16 Financial Highlights ________________ 18 2013 Research Grantees____________ 19 Scientiﬁc Review Committees ______ 21 Heritage Society Members __________ 23 Board & Leadership ________________ 24

Dear Friends, ne in sixteen Americans age 40 and above suffers from Alzheimer’s disease, macular degeneration or glaucoma. Left unabated, the growing wave of people living longer and requiring long-term care for these diseases means that families, communities, and our nation face strained social and economic resources. BrightFocus Foundation (formerly known as American Health Assistance Foundation) is a nonprofit organization supporting research and providing public education to eradicate brain and eye diseases. For more than 35 years, we have funded research to end these incurable diseases. During this time, we have awarded more than 1,000 grants worldwide for a total of $130 million, including more than $26 million in the last four years alone. Our research funding has led to major contributions to the understanding of these diseases and to the awarding of two Nobel prizes. At BrightFocus, we take our mission quite personally. The loss, frustration, sadness, and anxiety of these diseases has touched the lives of our board and of our staff. While we have made significant advances that have brought us closer to new treatments, we have more work to do and no time to lose. BrightFocus occupies a unique position in the world of research, identifying the most promising research opportunities. We initiate and fund the best ideas within the scientific community. Our grants are vetted by the world’s top scientists and have successful outcomes. We at BrightFocus believe that finding cures to these diseases must be made a national priority. Our strategic alliances with other nonprofits and advocacy organizations help raise awareness of the urgency for Alzheimer’s disease, macular degeneration, and glaucoma research in the scientific community, Congress, and among decision makers who determine health science research priorities.

BrightFocus 2013 Annual Report

With the continued strain and decline on federal funds for research, it is vital we keep the pipeline well-funded. Our five-year strategic plan aims to increase support for research and engage our nation in the fight. Knowing our mission must be articulated in a way that is clear and compelling, our new name, BrightFocus, reflects our hope and commitment to slowing, preventing and treating brain and eye diseases: “Cure in Mind. Cure in Sight.” Many thanks to our esteemed panel of scientific review members, partners and all those who support our shared mission. Above all, we thank our donors. Only with your support, will we reach the day when diseases of mind and sight no longer threaten our loved ones.

stacy pagos haller President and CEO

Grace frisone Chairman of the Board

alZheiMeR’s Disease ReseaRch

We fund breakthrough research. Your gift gives hope to millions. Alzheimer’s disease is a devastating diagnosis for patients and their families. It robs victims of their awareness, memory, and judgment, and deprives families of the person they once knew and loved. Alzheimer’s is the sixth leading cause of death across all ages in the United States and the only one with no treatment or cure.

Alzheimer’s Disease’s Deadly Toll More than five million Americans suffer from Alzheimer’s disease. The number of cases is expected to triple in the next 40 years. Every 68 seconds, someone in America develops Alzheimer’s. By mid-century, someone in America will develop the disease every 33 seconds. $157 billion to $215 billion is the annual cost of Alzheimer’s and other forms of dementia, annually, making it more costly than heart disease or cancer. More than 15 million Americans provide unpaid care for a person with Alzheimer’s disease or other dementias.

BrightFocus 2013 Annual Report

alZheiMeR’s Disease ReseaRch

romising research is underway to determine if the neuritic plaques formed in the brain, believed to be the cause or result of Alzheimer’s disease, can be slowed or prevented. These clumps of beta-amyloid protein are thought to kill brain cells in many ways, including cell-to-cell communication in the brain. In addition, the cells depend on a protein called tau for normal brain function. In Alzheimer’s patients, threads of tau protein form tangles, which interfere with the transport of nutrients and other essential materials.

Alzheimer’s Disease Research (ADR), a program of BrightFocus Foundation, funds research focused on early detection of the disease; treatments to help slow or stop disease progression and the accumulation of detrimental proteins; and ways to stop proteins from becoming deadly to the brain. To date, ADR has provided more than $82.5 million in funding to Alzheimer’s disease research projects. This year, BrightFocus also co-founded the 21st Century Brain Trust™. This coalition of four non-profits was awarded a $100,000 prize, out of submissions from more than 280 partnering organizations to the Sanofi US’s Partners in Patient Health Collaborate | Activate Innovation Challenge. The trust made its first grant of $50,000, managed by BrightFocus, to fund clinical trial testing opportunities for patient engagement in health through mobile health technologies. The projects range from advanced genetic studies that aim to identify inheritable risks for Alzheimer’s disease, to the development of new therapeutic interventions against the disease.

BrightFocus 2013 Annual Report

ADR has a successful track record of funding research that has led to breakthroughs in understanding Alzheimer’s disease. We support the President’s BRAIN Initiative—short for Brain Research through Advancing Innovative Neurotechnologies. This National Institutes of Health program will help create detailed maps of the human brain, fostering new ways to treat, cure, and prevent brain disorders. We also call on Congress to make research a national priority.

“Funding from BrightFocus provided a vital bridge between a novel research idea and the preliminary results necessary to obtain prolonged government support for the development of new treatments and therapies.” – Dr. Paul Greengard, Ph.D., BrightFocus honorary board member, former BrightFocus grantee, and Nobel Prize recipient for contributions to understanding signal transduction in the nervous system.

ReseaRcheR pRofile

Boosting Immunity in the Brain as a Possible Cure

Dr. Maya KoronyoHamaoui, Ph.D., Cedars-Sinai Medical Center, Los Angeles, CA

Dr. Maya Koronyo-Hamaoui (Koronyo) saw the ravages of Alzheimer’s disease by caring for her father, a successful pediatrician. The condition robbed him of his memories and eventually his life. Today she is an assistant professor, and head of the Neuroimmunology and Retinal Imaging Laboratory, at Cedars Sinai Medical Center. Koronyo received a BrightFocus Foundation grant to study a protein associated with controlling blood pressure and immune cell behavior. She is examining its potential role in reducing the accumulation of

beta-amyloid, thought to be a hallmark of Alzheimer’s disease. “I believe one of the most promising therapeutic approaches is to target the disease’s multiple abnormalities with the body’s own intricate and powerful immune system,” she says. Specifically, Koronyo and her team and her collaborator, Dr. David Teplow of the University of California, Los Angeles, will investigate whether ACE enzymes produced by immune cells can facilitate the clearance of toxic beta-amyloid. If successful, the research could lead to therapies

to safely target the site of the betaamyloid in Alzheimer’s patients and enhance immune responses that protect the brain. “I greatly appreciate BrightFocus donors and can assure them that their contributions are being used to help find a solution for those who suffer daily, are frustrated, confused, and scared as a consequence of this terrible disease, and to help those who find themselves in the unthinkable role of caring for their deteriorating loved ones,” she says.

DonoR pRofile

A Bad Diagnosis Leads to Doing Good Southern California residents Colonel Sherman A. Smith, USMC (Ret.), and his wife, Lady, received a disheartening diagnosis some six years ago. Lady, who was experiencing vision problems, had wet macular degeneration, the most severe form of the incurable disease. Fortunately, she had a good ophthalmologist and retinologist, who recommended eye injections to prevent the growth of abnormal blood vessels that lead to vision loss. Even though Mrs. Smith had to quit driving, she still has some reading capability. In addition to vision loss, the Smiths—who are in their 90’s—

have many friends and associates who have Alzheimer’s disease. They both felt that they wanted to do something to promote research to help those suffering from macular degeneration and Alzheimer’s disease. The Smiths established charitable gift annuities with Alzheimer’s Disease Research and Macular Degeneration Research, programs of BrightFocus Foundation, so they could make meaningful gifts now toward research. “We wanted the satisfaction of knowing that important research and investigation could be pursued through our

charitable gift annuities,” said Col. Smith. Their support is helping BrightFocus reach out and explain these diseases to the public. Most importantly, the Smiths urge people “to stay in close touch with your doctors and be vigilant as to your own eye and mental health. There is help out there but you have to seek it.” BrightFocus thanks the Smiths for their generous contributions to advance innovative research into some of the toughest diseases facing Americans today.

BrightFocus 2013 Annual Report

MoTiVaTinG iDeas:

Emerging Concepts in Alzheimer’s Disease Research Emerging Concepts in Alzheimer’s Disease Research, an international conference focused on current and emerging Alzheimer’s research, was organized by BrightFocus and its European affiliates. Pictured with some of the world’s most prominent health scientists at the New Orleans, LA, conference are BrightFocus officials Guy Eakin, Ph.D., Vice President of Scientific Affairs (fourth row, far right); Diane Bovenkamp, Ph.D., Scientific Program Officer (front row, second from left); and Stacy Pagos Haller, President and Chief Executive Officer (second row, tenth from left). BrightFocus is committed to accelerating the impact of Alzheimer’s research through professional conferences, collaborative research, and grants for innovative research.

Our International Reach The diseases BrightFocus funds have no international boundaries. Our scientific review committees identify the most promising areas of research—no matter where it is being conducted. To date, BrightFocus research has taken place in 19 countries. We partner with four European affiliates on Alzheimer’s disease research. This network generates valuable funding and public information to advance research and educate millions of people all over the world. GERMANY Alzheimer Forschung Initiative e.V. (AFI) DUSSELDORF | www.alzheimer-forschung.de/

BELGIUM Stichting Alzheimer Onderzoek / Fondation Recherche Alzheimer ZELLICK | www.alzh.org

THE NETHERLANDS Internationale Stichting Alzheimer Onderzoeck MAASTRICHT | www.alzheimer.nl/

Prominent scientists and young researchers from around the world gather for an interactive workshop on Alzheimer’s disease, sponsored in part by BrightFocus.

BrightFocus 2013 Annual Report

FRANCE Lingue Europèene Contre La Maladie d’Alzheimer PARIS | www.maladiealzheimer.fr

MaculaR DeGeneRaTion ReseaRch

The need for a cure has never been clearer. Age-related macular degeneration (AMD) is a leading cause of vision loss in the U.S. It destroys the macula, the part of the eye that provides sharp, central vision needed for seeing objects clearly. The most common eye condition in people age 60 and older, it can lead to vision loss in one or both eyes, making it difficult to recognize faces, drive a car, read, or do close work, such as sewing or fixing things around the house.

A Leading Cause of Irreversible Blindness Nearly 11 million people in the United States have some form of macular degeneration. This number is expected to double to nearly 22 million by 2050. The number of people living with all forms of macular degeneration today is similar to those who have all types of cancer. Direct health care costs in U.S. are $255 billion. No treatment or cure for the most advanced form.

BrightFocus 2013 Annual Report

MaculaR DeGeneRaTion ReseaRch

he dry form of Macular Degeneration (AMD) causes light-sensitive cells of the macula to slowly begin to break down. In the wet form of AMD, which is the more severe form of the disease, abnormal blood vessels grow behind the macula. Symptoms can occur gradually over time, or more quickly in some patients, leading to vision loss in one or both eyes. There is no cure for AMD and limited treatments for preventing or treating it.

AMD leads to a diminished quality of life for many older people. Patients are often unable to continue working, volunteering, or doing many of life’s daily activities that many of us take for granted. Although some symptoms of AMD can be mitigated with low-vision services and devices, it’s not surprising that many patients feel isolated and depressed. Macular Degeneration Research (MDR), a program of BrightFocus Foundation, has awarded nearly $14 million to scientists studying the disease. The latest research is focused on novel treatments for the disease, understanding its causes and progress, drug therapies, and new screening techniques. With your generous support, BrightFocus is committed to finding a cure for this pervasive disease and providing a brighter future for patients and their families.

BrightFocus 2013 Annual Report

ReseaRcheR pRofile

“I see fuzzy rings around the lamp.”

Martin-Paul Agbaga, Ph.D., University of Oklahoma Health Sciences Center, Oklahoma City, OK

During college, Martin-Paul Agbaga thought he knew what medical career path to follow until a fateful visit with his father in Ghana in 1996. “On this particular visit, my father told me his eyesight was getting bad and affecting his driving badly and that he saw fuzzy rings around the lamp,” said Dr. Agbaga. “We have a history of eye problems in our extended family, so I knew something was wrong.” A doctor diagnosed glaucoma and recommended immediate surgery to reduce his father’s eye pressure, which was extremely high. The experience of his father’s failing eyesight, as well as other medical problems that ultimately claimed his father’s life in 2002, were major factors in Agbaga’s decision to devote his career to eye disease research.

Macular Degeneration Research awarded Agbaga a grant to research causes for the juvenile onset of macular degeneration in autosomal dominant Stargardt-like Macular Dystrophy (STGD3). This is an inherited form of macular degeneration that occurs in about one in 8,000 to 10,000 children and begins to cause visual loss somewhere between the ages of three and 50, with an average age of 14 years. The onset of vision loss is gradual and then rapidly progresses to legal blindness levels—often within the teenage years. Patients first notice difficulty in reading, complaining of gray, black, or hazy spots in the center of their vision. The disease is caused by mutations in a gene called Elongation of Very Long Chain Fatty Acids-4 (ELOVL4). Agbaga

and his colleagues discovered that the normal ELOVL4 protein is responsible for making a unique group of fatty acids found in the eye, but the mutant ELOVL4 is unable to make these unique fatty acids and is misdirected to the wrong cellular compartments in the eye. With the grant from BrightFocus, Agbaga’s team will work on identifying the mechanism behind how the mutant ELOVL4 protein signals early-onset macular degeneration in patients with ELOVL4 mutations. “As a team, we seek the scientific truth behind the cause of blinding eye diseases to develop therapeutics that will ameliorate the rate of disease progression,” said Agbaga.

BrightFocus 2013 Annual Report

DonoR pRofile

A Gift in Memory of Her Fighting Spirit By all accounts, Carolyn Kathryn McGillvray was an active participant in life: businesswoman, investor, world traveler, wife, mother, and a cook best known for her outstanding pies. She and her husband, Frank, established the first Western Auto Store in Lincoln, ME, in 1949. After Frank’s death in 1981, Carolyn continued to work part-time and travel to exotic locales such as Antarctica and Vietnam. Her son, Karl McGillvray, first noted her vision problems when she failed to realize a rose bush near her house had bloomed. But the diagnosis of macular degeneration did not prevent her from working part-time until the age of 85. Although her poor eyesight did not allow her to work at the computer, she continued to assist customers and help clean the store. Karl, a Navy veteran and businessman, and his wife Yoriko, divide their time between Maine and Florida and are also avid travelers. They made a major gift to Macular Degeneration Research to honor Carolyn and her fighting spirit against vision loss. That memory lives on in The Carolyn K. McGillvray Memorial Award, which was awarded for outstanding research in May to Dimitrios Morikis, Ph.D., of the University of California, Riverside. (See page 20.)

BrightFocus 2013 Annual Report

naTional GlaucoMa ReseaRch

Our research oﬀers hope for a clearer future. Glaucoma is a group of diseases that damage the eye’s optic nerve and can result in vision loss and blindness. With early detection and treatment, glaucoma can be managed to protect eyes from serious vision loss.

The Leading Cause of Blindness in the World More than three million Americans age 40 and older have glaucoma. An estimated 2.72 million have open-angle glaucoma, the most common form of the disease. It is estimated that only half of the people living with glaucoma are aware they have the disease. Over 60 million people in the world have openangle and angle-closure glaucoma. That number is expected to increase by 20 million over the decade between 2010 and 2020.

BrightFocus 2013 Annual Report

naTional GlaucoMa ReseaRch

here are two main forms of glaucoma: open-angle (the most common form affecting approximately 60 percent to 95 percent of individuals) and angle-closure. There are also several other forms of glaucoma, including normal-tension, congenital, juvenile, and secondary.

At first, open-angle glaucoma has no symptoms. It causes no pain. Vision stays normal. Glaucoma can develop in one or both eyes. Without treatment, people with glaucoma will slowly lose their peripheral (side) vision. As glaucoma remains untreated, people may miss objects to the side and out of the corner of their eye. They seem to be looking through a tunnel. Over time, straight-ahead (central) vision may decrease until no vision remains. National Glaucoma Research (NGR), a program of BrightFocus Foundation, has awarded more than $22.6 million worldwide for the study of glaucoma. NGR-supported research has been focused on the eye-brain connection and the mechanisms for pressure buildup; preventing the death of axons in the optic nerve that occurs in the disease; and understanding the role genes play in order to develop early glaucoma screening and targeted treatments.

BrightFocus 2013 Annual Report

Researcher profile

Exploring the Eyes’ “Caves” for Potential Therapies

Dr. Michael Elliott, Ph.D., University of Oklahoma

Dr. Elliott had an “aha” moment that led to his application for a research grant from BrightFocus. He was at his lab at the University of Oklahoma studying the role the CAV1 gene plays in the retina when he came across research that linked the gene to an increased risk of developing primary openangle glaucoma. “It hit close to home since my father has been living with glaucoma for the past 30 years,” said Elliott. The CAV1 gene is responsible for forming “caveolae”—small, cavelike areas in the cell membranes. Research shows these could trigger sensors for mechanical changes in cells, such as those that cause increases in eye pressure. These caveolae are abundant in meshwork cells in the eyes’

Below: National Glaucoma Research pathways where aqueous fluid grantee Dr. Michael Elliott, Inés flows outward. Dr. Elliott’s results (daughter) and his father, Bob, who has suggest that loss of caveolae lived with glaucoma for 30 years. increases eye pressure. Dr. Elliott hypothesizes that caveolae indeed act as sensors that regulate fluid drainage, and that mutations in the CAV1 gene may deactivate the sensors— opening the door for potential gene therapies. Although Dr. Elliott’s father, Bob, controls his glaucoma with medication, current medical therapies are not effective for many glaucoma sufferers. The potential of this research could help identify new therapeutic targets for improved medical therapies for glaucoma, and provide insight into glaucoma disease mechanisms.

D o n o r Pr o f i l e

Steven and Barbara Rothman: A Son’s Fitting Tribute to Mom Florence Rothman was a perfect role model for her sons, Michael and Steven. A middle school teacher in northern New Jersey for 30 years, she was a dynamic individual with a forceful personality. After her death, her sons changed their careers, coming together to work in medical research. The result was five years inventing a method for early detection of declines in

patient condition; the Rothman Index was named in her memory. Things began to change for Florence and the family as her vision weakened, the result of “low-tension” glaucoma. She retired and stopped driving. Years passed as her vision slowly deteriorated, despite attention by doctors. Steven recalls how sad the slow-motion decline into blindness was. Florence grew

increasingly isolated from friends, who most likely did not know how to accommodate blindness into social situations. Medical science as yet knows very little about how to stop the progression of low-tension glaucoma. Steven and his wife Barbara recognized that the only answers can come from innovative research, so they spent time with us, investigating the National

Glaucoma Research program to cure glaucoma. Their substantial donation is a “Challenge Gift”—a way to encourage others to match funds, contributing together to the effective support of glaucoma research. It’s the Rothmans’ hope that we can save others from the suffering their mother endured.

BrightFocus 2013 Annual Report

puBlic infoRMaTion, conTRiBuTinG To BRiGhTfocus

Reaching Hearts and Minds through Public Education Engaging the public in a dialogue about the critical need for innovative research, and the steps individuals can take to prevent, mitigate, and cope with disease is a critical part of BrightFocus’ mission. Thanks to our donors, this year BrightFocus launched a series of public outreach initiatives and partnerships to reach a wide audience with messages about Alzheimer’s disease, macular degeneration, and glaucoma.

BrightFocus in the News The media considers BrightFocus a trusted source on issues related to disease. Executive and scientific staff are regularly quoted and interviewed by the national media, including National Public Radio, Politico, Voice of America, Medical Daily, Seattle Post-Intelligencer, and Rochester Post-Bulletin. BrightFocus also participated in TEDMED and National Press Club panels addressing Alzheimer’s disease. BrightFocus-funded research projects made national headlines in this fiscal year, including high-visibility studies suggesting roles for previously-approved cancer and diabetes drugs in combating Alzheimer’s disease; progress in the development of a molecular switch to replace dying photoreceptors, as well as progress in treating the currently untreatable dry form of macular degeneration; and new genetic links that might control how glaucoma is passed from one generation to another. 14

BrightFocus 2013 Annual Report

Promoting Public Health Among BrightFocus’ most requested publications is the 35-page booklet, “Living with Alzheimer’s Disease.” An award-winning national public service campaign, “Now is the Moment to Stop Alzheimer’s Disease,” was produced in English and Spanish, and began running nationwide on TV and radio. A public service announcement entitled, “What Would You Like to See?” aired on TV, radio, and on the Internet as part of our “See a Better Tomorrow” campaign to raise awareness of the need for regular eye exams to maintain healthy vision. These materials are part of BrightFocus’ ongoing media campaign to educate and inform, including direct mail, email alerts, expert opinions online, social media, news releases, podcasts, videos, and publications.

Now is the Moment to Stop Alzheimer’s Video Family members discuss how Alzheimer’s disease has affected their lives in “Now is the Moment to Stop Alzheimer’s,” a public service announcement produced by BrightFocus. WATC H TO DAY

http://www.brightfocus.org/aboutbrightfocus/ public-education/psas/alzheimers-disease-learn-more-60.html

Acting as an Advocate for Scientists BrightFocus continues its partnership with the academic journal, Molecular Neurodegeneration, as the official journal of BrightFocus Foundation. The journal publishes technical papers primarily on topics related to the Alzheimer’s Disease Research program. As an “open access” journal, there is no fee for readers, and all content is freely available through its website. This ensures maximal exposure of journal contents to scientists and care providers worldwide. BrightFocus increased its advocacy activity on Alzheimer’s disease, collecting more than 22,000 signatures on a Stop Alzheimer’s Petition. The results of a BrightFocus researcher survey in February revealed that a large majority of Foundationfunded scientists conducting brain or vision research believe that inadequate federal research funding is threatening a “brain drain” of talented researchers.

We’re Closer to a Cure Because of Your Contributions BrightFocus has a multi-decade track record as a leader in advancing scientific research seeking a cure for diseases including Alzheimer’s disease, macular degeneration, and glaucoma. We take a bold approach that has been shown to lead to major breakthroughs in understanding and developing therapies to treat disease. Through the support of our committed donors and a network of world-class scientists, we have the ability to identify, fund, and cultivate emerging research leaders, drug therapies, and treatments. Thank you to the more than 350,000 donors who contributed to BrightFocus in fiscal year 2013. We also thank the 15,000 donors who, every year for 10 or more consecutive years, have contributed to Alzheimer’s Disease Research, Macular Degeneration Research, or National Glaucoma Research. Your help brings BrightFocus one step closer to conquering these debilitating diseases and ensuring a world in which everyone has the opportunity to see and experience life with clarity.

BrightFocus 2013 Annual Report

waYs To GiVe

Ways to Give BrightFocus is a not-for-profit organization supported entirely by contributions from hundreds of thousands of individuals, as well as private foundations and corporations. Many donors direct their gifts to one or more of our research programs: Alzheimer’s Disease Research, Macular Degeneration Research, or National Glaucoma Research. Others choose to support BrightFocus in general, which helps us strengthen our research, advocacy, and public information work. However you contribute, you help advance knowledge on the possible causes, prevention, and treatments for these life-altering diseases.

Gifts of stock—donating a gift of publicly-traded stock may provide greater tax benefits than giving cash Gifts of real estate Bequests—by naming BrightFocus a charitable beneficiary of an estate or trust, you become a member of our Heritage Society Gifts of life insurance Charitable gift annuities—make a charitable gift and receive lifelong income at the same time Retirement plans Honor or memorial gifts

Matching gifts—many companies match an employee’s donations to charitable organizations Workplace contributions – Alzheimer’s Disease Research participates in the Combined Federal Campaign (#30518) for federal workers and numerous state government campaigns

After losing her father to Alzheimer’s disease, Bonnie chose to honor her parents’ memories by naming Alzheimer’s Disease Research as a beneficiary in her will.

Designate BrightFocus or any of our three programs through a local United Way campaign

“I wanted to do something to contribute to the research and hope that someday they will find a cure for the disease, or at least something to alleviate the effects of the disease,” she said.

Walkway of Hope™—honor a loved one with a personalized bench, brick paver, or tree in the garden pathway located at our Clarksburg, Maryland headquarters

For more information on these giving opportunities, visit www.brightfocus.org/donate or call us at 1-800-437-2423.

BrightFocus 2013 Annual Report

Bonnie Rea of Concord, California, lost her father to Alzheimer’s disease. She also watched her mother fade away from dementia, saying it was the most heart-wrenching thing she has ever experienced. “I visited her twice a day and each time would ask her, ‘Do you know who I am?’ The answer was always the same, ‘You are my little angel that comes to visit me every day.’ “I wanted to do It was not until the last few something to minutes of her life that she contribute to the remembered who I was,” she research and hope explains. that someday they “She told the nurse, ‘You had will ﬁnd a cure for better call my Bonnie,’ and then, the disease...” at age 89, she passed away.”

BrightFocus staff can help facilitate your preferred type of gift. Cash gifts

Bonnie Rea: A Gift for the Living

coMMuniTY ouTReach

Personal Events Many donors fundraise for BrightFocus programs by holding activities within their communities, often in memory or honor of a loved one. BrightFocus thanks all of those contributors who sponsored, hosted or supported special events in 2013 for Alzheimer’s Disease Research, Macular Degeneration Research, and National Glaucoma Research programs in 2013. Sea Colony Women’s Club – Jupiter, FL South Side Lionettes – St. Louis, MO Charity Challenge – Tewksbury, MA Vernon Lions Club – Vernon, CT Bausch & Lomb – St. Louis, MO Odyssey Angels – Reston, VA Wilkins Family Charitable Foundation – Bath, NY Bowling Fundraiser (Tenore) – Elmhurst, PA Bill Regan (Maxfield) – Wolfeboro, NH Mrs. Mickey Karlan – Rye Brook, NY St. Felicitas Catholic Church – San Leandro, CA Line Dance Club – Tamarac, FL

Taking a Step Forward Toward a Cure Marv Welstead’s commitment to Alzheimer’s advocacy and research is inspiring, especially when you consider that he is in his 90s. For eight years, Marv cared for his wife Jean. He helped her re-learn how to eat and swallow and sat by her side when she lost use of her arms and legs. Her battle inspired him to get involved in the formation of The Fremont Area Alzheimer’s Committee in Fremont, Nebraska. From the beginning, the Committee has been on the move. They started the “Step Toward Progress” annual walk on a local college campus, and have been vocal advocates raising awareness about the importance of investing in Alzheimer’s research. More than one-third of the funds raised through last year’s event were sent to BrightFocus to support cutting-edge Alzheimer’s research. Below: Marv Welstead (center) leads a group on the ﬁrst lap at Midland University in Fremont, NE. Part of the proceeds go to BrightFocus’ Alzheimer’s Disease Research program.

Monterey Park Senior Citizens Club – Monterey Park, CA JTD Productions, Inc. – Woodstock, NY Carroll Lutheran Village, Inc. – Westminster, MD Plantation Estates – Matthews, NC Baker Hostetler – Orlando, FL MTA NYC Transit Authority – New York, NY Bethany United Church of Christ – Bethlehem, PA

BrightFocus 2013 Annual Report

financial hiGhliGhTs, GRanTs

Financial Highlights BrightFocus Foundation is a not-for-profit organization designated under Section 501(c)(3) of the Internal Revenue code. All contributions to BrightFocus and its programs are tax-deductible to the extent allowed by law. The foundation and its programs receive no government funding, and are supported entirely by voluntary private contributions.

consoliDaTeD sTaTeMenT of financial posiTion

consoliDaTeD sTaTeMenT of acTiViTies

as of MaRch 31, 2013

foR The fiscal YeaR enDeD MaRch 31, 2013

(in thousands of dollars)

ASSETS

Cash and Investments Charitable Trusts and Bequests Receivable Rental Property Fixed Assets, Net Other Assets TOTAL ASSETS

$27,168 5,336 4,053 4,550 1,132 $42,239

TOTAL LIABILITIES

NET ASSETS

$742 11,925 1,538 — $14,205

Unrestricted Temporarily Restricted Permanently Restricted

$15,916 12,028 90

TOTAL NET ASSETS

$28,034

TOTAL LIABILITIES AND NET ASSETS

BrightFocus 2013 Annual Report

Contributions and Grants Bequests Donated Services Investment Income Rental & Other Income TOTAL SUPPORT AND REVENUE

$18,134 5,360 15,998 1,503 837

$42,239

Program Services Research Health Information Services TOTAL PROGRAM SERVICES Supporting Services Fundraising Management and General TOTAL SUPPORTING SERVICES TOTAL EXPENSES CHANGE IN NET ASSETS

80% Programs 40% Research & Health Information

40% Donated Services*

13% Fundraising

$41,832

EXPENSES

LIABILITIES

Accounts Payable and Other Liabilities Grants Payable Charitable Gift Annuities Mortgage Payable

SUPPORT AND REVENUE

BrightFocus Foundation 2013 Expense Percentage

7% Management $9,805 22,052 $31,857 $5,030 2,610 $7,640 $39,497 $2,335

A complete copy of the financial statement audited by Raffa, P.C., is available upon request from BrightFocus Foundation, 22512 Gateway Center Drive, Clarksburg, MD 20871, or on our website at brightfocus.org. *BrightFocus received in-kind donations to expand our public health information outreach. This allowed BrightFocus to reach millions of people with information about risk factors, treatments, and caregiving for the three areas on which we focus.

Grant Recipients 2013 BrightFocus Research Grant Recipients – Alzheimer’s Disease Research Hirohide Asai, M.D., Ph.D. A Novel Cellular Mechanism to Understand Spreading of Tau Aggregation in Alzheimer’s Disease Brain

Boston University, School of Medicine, Boston, MA July 1, 2013-June 30, 2015—

Se Hoon Choi, Ph.D.

David Harris, M.D.

Tao Ma, M.D., Ph.D.

Jessica Young, Ph.D.

Investigating Whether ADAM10 Protein Modulates Birth of New Neurons in Adult Brain

Treating Alzheimer’s Disease with Drugs Directed Against the Prion Protein

Dissecting the Role of Genetic Factors that Predispose Individuals to Sporadic Alzheimer’s Disease

Massachusetts General Hospital, Boston, MA July 1, 2013-June 30, 2015—

Boston University, School of Medicine, Boston, MA July 1, 2013-June 30, 2016—

A New Study to Rescue Memory Impairments in Alzheimer’s Disease by Changing a Cellular Signaling Pathway

$100,000

New York University, New York, NY July 1, 2013-June 30, 2015—

University of California, San Diego, La Jolla, CA July 1, 2013-July, 31, 2015—

$250,000

$100,000

Carlos Cruchaga, Ph.D.

Joachim Herz, M.D.

Crystal M. Miller, Ph.D.

Abraham Zangen, Ph.D.

A New Method to Identify Protein and Genes Involved in Alzheimer’s Disease

A Novel Therapeutic Approach to the Prevention of Alzheimer’s Disease

Clinical Study to Treat Alzheimer’s Disease with Magnetic Stimulation of Deep Brain Regions

Washington University in St. Louis, St. Louis, MO June 1, 2013-June 30, 2016—

University of Texas Southwestern Medical Center, Dallas, TX July 1, 2013-June 30, 2015—

Understanding How an Innate Immune Signaling Pathway in Microglia Affects Different Stages of Tau Pathology

$248,172

$150,000

Dolores Del Prete, Ph.D.

Lee-Way Jin, M.D., Ph.D.

Adam Bero, Ph.D.

Searching the Main Actors Involved in Human Dementia

A New Anti-Inflammatory Therapy for Alzheimer’s Disease

Albert Einstein College of Medicine, Bronx, NY July 1, 2013-June 30, 2015—

University of California, Davis, Davis, CA July 1, 2013-June 30, 2016—

$100,000

$250,000

Laurie Erb, Ph.D.

Maya Koronyo-Hamaoui, Ph.D.

Exploring New Ways to Prevent Brain Cell Death by Increasing Blood Flow

Delivery of ACE by Immune Cells to Reduce Beta-Amyloid Pathology for Alzheimer’s Disease Treatment

The Curators of the University of Missouri, Columbia, MO July 1, 2013-June 30, 2016—

Cedars-Sinai Medical Center, Los Angeles, CA July 1, 2013-June 30, 2016—

$250,000

Massachusetts Institute of Technology, Cambridge, MA July 1, 2013-June 30, 2015— $100,000

Lester Binder, B.A., M.Phil., Ph.D. Are Tau Oligomers the Elusive Toxic Species of Tau Within Alzheimer’s Disease?

Michigan State University, East Lansing, MI July 1, 2013-June 30, 2016— $250,000

Paramita Chakrabarty, Ph.D. How Inflammation in the Brain and Periphery Affect Brain Pathology in Common Dementias Such as Alzheimer’s Disease

University of Florida, Gainesville, FL July 1, 2013-June 30, 2016— $249,840

Nilufer Ertekin-Taner, M.D., Ph.D.

Hongmei Li, Ph.D.

Identifying Novel Drug Targets in Alzheimer’s Disease Using Brain Gene Expression

Understanding the Causal Link between Brain Blood Flow Reduction and Alzheimer’s Disease and Exploring a Novel Nano-Drug Treatment

Mayo Clinic Jacksonville, Jacksonville, FL July 1, 2013-June 30, 2016— $250,000

Vivek Gautam, D.V.M., Ph.D. Novel Factors that Regulate Alzheimer’s Disease Pathology

Baylor College of Medicine, Houston, TX July 1, 2013-June 30, 2015— $100,000

Fan Liao, Ph.D.

Massachusetts General Hospital, New Therapeutic Approach Harvard Medical School, Boston, MA for Alzheimer’s Disease via Decay of Memory Networks in July 1, 2013-June 30, 2015— Apolipoprotein E Alzheimer’s Disease $100,000 Washington University in Massachusetts General Hospital, St. Louis, St. Louis, MO Harvard Medical School, Boston, MA July 1, 2013-July, 31, 2015— July 1, 2013-June 30, 2015— $100,000 Jasmeer P. Chhatwal, M.D., Ph.D.

Ben-Gurion University of the Negev, Beer-Sheva, Israel July 1, 2013-June 30, 2016— $190,000

$100,000

A Molecules-to-Circuits Approach to Understanding the Causes of Memory Impairment in Alzheimer’s Disease

The Cleveland Clinic Foundation, Cleveland, OH July 1, 2013-June 30, 2015— Leonard Petrucelli, Ph.D. Studying How HDAC6 Influences Toxic Effects of Tau in Alzheimer’s Disease

Mayo Clinic Jacksonville, Jacksonville, FL July 1, 2013-June 30, 2016—

2013 BrightFocus Research Grant Recipients – Macular Degeneration Martin-Paul Agbaga, Ph.D.

Recipient of The Elizabeth Anderson Award What is the Cause of Macular Degeneration in STGD3 Patients?

$250,000

Ismael Santa-Maria Perez, Ph.D. MicroRNAs and Tau Gene Expression Regulation

University of Oklahoma Health Sciences Center, Oklahoma City, OK July 1, 2013-June 30, 2015— $120,000

Columbia University Medical Center, New York, NY July 1, 2013-June 30, 2014—

Ruth Ashery-Padan, Ph.D.

$50,000

Involvement of microRNAs in Retinal Diseases

Stephen Strittmatter, M.D., Ph.D.

Tel Aviv University, Tel Aviv, Israel July 1, 2013-June 30, 2015—

Prion Drugs for Alzheimer’s Disease Therapy

$120,000

Yale University School of Medicine, New Haven, CT July 1, 2013-June 30, 2016—

Venkata Chavali, Ph.D. Investigation of the Role and Function of Long Non-Coding RNAs Which May Serve as Novel Molecular Tools that Cause Age-Related Macular Degeneration

$250,000

Dominic Walsh, Bsc. (Hons), P.G.C.E., Ph.D. Identifying the Disease-Causing Form of the Amyloid Beta-Protein in Human Brain

Brigham and Women’s Hospital, Boston, MA January 1, 2014December 31, 2016—

University of Pennsylvania School of Medicine, Philadelphia, PA July 1, 2013-June 30, 2015— $120,000

$250,000

$100,000

BrightFocus 2013 Annual Report

Jing Chen, Ph.D.

Jonathan Lin, M.D., Ph.D.

Marcelo Nociari, Ph.D.

A New Mechanism Linking Lipid and Altered Inflammation in Neovascular AMD

A New Source of Stem Cells to Treat Age-Related Macular Degeneration

Development of a New Therapy for Age-Related Macular Degeneration

Boston Children’s Hospital, Boston, MA July 1, 2013-June 30, 2015—

University of California, San Diego, La Jolla, CA July 1, 2013-June 30, 2015—

Joan and Sanford I. Weill Medical College of Cornell University, New York, NY July 1, 2013-June 30, 2015—

$120,000

Sarah L. Doyle, B.A., Ph.D.

Chi Luu, Ph.D.

Magali Saint-Geniez, Ph.D.

Investigating if an Uncontrolled Immune Response to Your Own Damaged Cells Causes the Progression of AMD

Clinical Characterisation of AgeRelated Macular Degeneration Using Novel Imaging and Functional Techniques

Role of Cell Metabolism Regulators in Cell Function and Death and Implications for AMD

Trinity College Dublin, Dublin, Ireland July 1, 2013-June 30, 2015—

Centre for Eye Research Australia, University of Melbourne, Melbourne, Australia July 1, 2013-June 30, 2015—

$120,000

Chenghua Gu, D.V.M., Ph.D. New Therapeutic Strategy for Neovascular Age-Related Macular Degeneration

Schepens Eye Research Institute, Boston, MA July 1, 2013-June 30, 2015— $120,000

$120,000

Shusheng Wang, Ph.D.

Dimitrios Morikis, Ph.D.

Tiny RNAs with a Big Role in AgeRelated Macular Degeneration

Recipient of The Carolyn K. McGillvray Memorial Award Drug Discovery for Macular Disease

Harvard Medical School, Boston, MA University of California, Riverside, July 1, 2013-June 30, 2015— Riverside, CA $120,000 July 1, 2013-June 30, 2015—

Tulane University, New Orleans, LA July 1, 2013-June 30, 2015— $120,000

$120,000

The Elizabeth Anderson Award Recipient: Martin-Paul Agbaga, Ph.D.

This award is selected by the Anderson family and presented annually in honor of Mrs. Anderson, the beloved wife of Robert (Gene) Anderson, a longstanding member of the BrightFocus Scientific Review Committee for Macular Degeneration Research. Mrs. Anderson was dedicated to the vision research community and took particular interest in young scientists whom she shepherded through the difficulties of their early careers.

2013 BrightFocus Research Grant Recipients – Glaucoma

Matthew Glucksberg, Ph.D.

Curtis Brandt, Ph.D., FARVO

Northwestern University, Chicago, IL July 1, 2013-June 30, 2014—

An Improved Gene Delivery Method to Lower Eye Pressure in Primate Eyes

Board of Regents of the University of Wisconsin System, School of Medicine and Public Health, Madison, WI July 1, 2013-June 30, 2015— $100,000

Kevin Chan, Ph.D. Effects of Prolonged Eye Pressure Elevation on Visual Brain Changes

University of Pittsburgh, Pittsburgh, PA July 1, 2013-June 30, 2015—

Carolyn K. McGillvray was a successful businesswoman, savvy investor, and muchloved wife, mother and grandmother who died at the age of 99 in 2008. Her son made a generous gift to Macular Degeneration Research to honor her memory and her fighting spirit as she battled macular degeneration. Even as her vision deteriorated, Mrs. McGillvray traveled around the world, including Antarctica, and continued to work until she was 85, adapting her duties to accommodate her low vision. The research project selected to receive this award was chosen by her family. 20

BrightFocus 2013 Annual Report

Alex Hewitt, M.B.B.S. (Hons), M. Med. Sci., Ph.D. Development of a Patient-Specific Model of Glaucoma

Centre for Eye Research Australia, University of Melbourne, Melbourne, Australia July 1, 2013-June 30, 2015— $99,488

Yang Hu, M.D., Ph.D.

Anna Demetriades, M.D., Ph.D. New Method of Delivering Therapeutic Proteins to the Eye for the Treatment of Glaucoma

$100,000

Joan and Sanford I. Weill Medical College of Cornell University, New York, NY July 1, 2013-June 30, 2015— $100,000

Michael H. Elliott, Ph.D. Recipient of The Thomas R. Lee Award Novel Mechanism of Control of Aqueous Fluid Drainage

University of Oklahoma Health Sciences Center, Oklahoma City, OK July 1, 2013-June 30, 2015—

Temple University, Philadelphia, PA July 1, 2013-June 30, 2015— Richard K. Lee, M.D., Ph.D. Stimulation of the Retina to ReGrow Axons that Allow Eye Cells to Make Connections to the Brain to Allow for Vision Recovery

Bascom Palmer Eye Institute, Miami, FL July 1, 2013-June 30, 2015— $100,000

Hyungsik Lim, Ph.D. A New Imaging Technique to Sensitively Detect Abnormal Changes in the Retinal Nerves

Investigating the Biology and Causes of Glaucoma Using Stem Cells

Hunter College, CUNY, New York, NY July 1, 2013-June 30, 2015—

Philip J. Gage, Ph.D.

Cell Replacement Therapy for Glaucoma

John H. Fingert, M.D., Ph.D. Recipient: Dimitrios Morikis, Ph.D.

$50,000

Recipient of The Douglas Johnson Award A Novel Way to Protect Neurons and Axons in the Eyes

$100,000

The Carolyn K. McGillvray Memorial Award

Mechanism of Cell Damage in Glaucoma: Effect of Rapid Depressurization on Cells

University of Iowa, Iowa City, Iowa $ 1 0 0 , 0 0 0 July 1, 2013-June 30, 2015— Kenneth J. Muller, Ph.D. $100,000 A New, Rapid, and Inducible Model of Glaucoma in Mice

Regents of the University of Michigan, Ann Arbor, MI July 1, 2013-June 30, 2015— $100,000

University of Miami, Miller School of Medicine, Miami, FL July 1, 2013-June 30, 2015— $100,000

S c i e n t i f i c R e v i e w C o mm i tt e e The Douglas Johnson Award Recipient: Yang Hu, MD., Ph.D.

This award is presented annually to the top-rated proposal in the National Glaucoma Research Program. Beyond his strong record of contributions to the glaucoma field, Dr. Johnson is fondly remembered at BrightFocus for his many years of service as Chairman of the Scientific Review Committee for our National Glaucoma Research program. Each year we bestow this award in recognition of exceptionally promising and forward-thinking ideas in the field of glaucoma.

BrightFocus Foundation Teams of Experts Volunteer teams of world-recognized experts in their respective health science fields compose BrightFocus’ Scientific Review Committees. All applications for BrightFocus research funding are carefully peer-reviewed and rated by these committees on the basis of scientific merit, resulting in significant advances in understanding diseases. ALZHEIMER’S DISEASE RESEARCH – SCIENTIFIC REVIEW COMMITTEE CHAIR

The Thomas R. Lee Award Recipient: Michael Elliott, Ph.D.

This award is presented annually to the secondhighest rated proposal in the National Glaucoma Research (NGR) program. Mr. Lee was a farmer, businessman, investor, real estate developer, and philanthropist. Inspired by his own battle with glaucoma, Thomas R. Lee bequeathed a significant gift to NGR to ensure continuous funding for research is available.

Darryl Overby, Ph.D.

Zhenhua Xu, Ph.D.

Can We Increase the Number of Drainage Pores in the Eye to Better Treat Glaucoma?

Protective Role of Nrf2 in Glaucoma

Imperial College London, London, United Kingdom July 1, 2013-June 30, 2015—

Johns Hopkins University, Baltimore, MD July 1, 2013-June 30, 2015— $100,000

$100,000

John Wood, B.Sc., D.Phil. Novel Way to Treat Experimental Glaucoma by Directly Preventing Nerve Axon Damage

South Australian Institute of Ophthalmology, Adelaide, Australia July 1, 2013-June 30, 2015— $100,000

Beatrice Yue, Ph.D. Can Optineurin Protein Aggregate to Form Toxic Amyloid-Like Fibrils or Oligomers?

University of Illinois Medical Center, Chicago, IL July 1, 2013-June 30, 2015— $100,000

Edward Koo, M.D. University of California, San Diego La Jolla, CA CO-CHAIR

David R. Borchelt, Ph.D. University of Florida Gainesville, FL COMMITTEE MEMBERS

Matthew Frosch, M.D., Ph.D. Massachusetts General Hospital Charlestown, MA Douglas Galasko, M.D. University of California, San Diego San Diego, CA Charles G. Glabe, Ph.D. University of California, Irvine Irvine, CA Alison M. Goate, D.Phil. Washington University in St. Louis St. Louis, MO

M. Flint Beal, M.D. The New York Hospital-Cornell Medical Center New York, NY

Yukiko Goda, Ph.D. RIKEN Brain Science Institute Saitama, Japan

Guojun Bu, Ph.D. Mayo Clinic, Jacksonville Jacksonville, FL

Todd E. Golde, M.D., Ph.D. University of Florida College of Medicine Gainesville, FL

George Carlson, Ph.D. McLaughlin Research Institute Great Falls, MT

Karl Herrup, Ph.D. Rutgers University Piscataway, NJ

Dennis Dickson, M.D. Mayo Clinic, Jacksonville Jacksonville, FL

David M. Holtzman, M.D. Washington University School of Medicine St. Louis, MO

Mark D’Esposito, M.D. Univeristy of California, Berkeley Berkeley, CA Steven Estus, Ph.D. University of Kentucky Lexington, KY

Allan I. Levey, M.D., Ph.D. Emory University Atlanta, GA Ronald K. Liem, Ph.D. Columbia University New York, NY Gerard Schellenberg, Ph.D. University of Pennsylvania School of Medicine Philadelphia, PA Jane M. Sullivan, Ph.D. University of Washington School of Medicine Seattle, WA Rudolph E. Tanzi, Ph.D. Harvard Medical School Massachusetts General Hospital Charleston, MA David Teplow, Ph.D. University of California, Los Angeles Los Angeles, CA

William Jagust, M.D. University of California, Berkeley Berkeley, CA Daniel A. Kirschner, Ph.D. Boston College Chestnut Hill, MA

Cynthia A. Lemere, Ph.D. Harvard Medical School Brigham and Women’s Hospital Boston, MA

Gopal Thinakaran, Ph.D. University of Chicago Chicago, IL Ronald B. Wetzel, Ph.D. University of Pittsburgh Pittsburgh, PA

BrightFocus 2013 Annual Report

Tony Wyss-Coray, Ph.D. Stanford University Medical School Stanford, CA Riqiang Yan, Ph.D. Cleveland Clinic Foundation Cleveland, OH Hui Zheng, Ph.D. Baylor College of Medicine Houston, TX

MACULAR DEGENERATION RESEARCH – SCIENTIFIC REVIEW COMMITTEE CHAIR

Joe G. Hollyﬁeld, Ph.D. The Cleveland Clinic Foundation Cleveland, OH COMMITTEE MEMBERS

Michael B. Gorin, M.D., Ph.D. Jules Stein Eye Institute University of California, Los Angeles Los Angeles, CA Claire Harris, Ph.D. Cardiff University Cardiff, Wales Alfred S. Lewin, Ph.D. University of Florida, Gainesville Gainesville, FL John Penn, Ph.D. Vanderbilt University School of Medicine Nashville, TN Sylvia B. Smith, Ph.D. Georgia Health Sciences University Augusta, GA

J. Crawford Downs, Ph.D. Devers Eye Institute Portland, OR C. Ross Ethier, Ph.D. Georgia Institute of Technology Emory University School of Medicine Atlanta, GA Thomas F. Freddo, O.D., Ph.D. University of Waterloo Waterloo, Ontario, CANADA Richard Libby, Ph.D. University of Rochester Medical Center Rochester, NY Stuart J. McKinnon, M.D., Ph.D. Duke University Durham, NC

Jayakrishna Ambati, M.D. University of Kentucky Lexington, KY

NATIONAL GLAUCOMA RESEARCH-SCIENTIFIC REVIEW COMMITTEE

Robert W. Nickells, Ph.D. University of Wisconsin-Madison Madison, WI

Bela Anand-Apte, Ph.D. The Cleveland Clinic Foundation Cleveland, OH

CHAIR

W. Daniel Stamer, Ph.D. Duke University Durham, NC

Robert E. Anderson, M.D., Ph.D. University of Oklahoma Health Sciences Oklahoma City, OK John D. Ash, Ph.D. University of Florida Gainesville, FL Catherine Bowes-Rickman, Ph.D. Duke University Durham, NC Albert O. Edwards, M.D., Ph.D. University of Oregon Eugene, OR Martin Friedlander, M.D., Ph.D. Scripps Research Institute La Jolla, CA

John C. Morrison, M.D. Oregon Health Sciences University Portland, OR COMMITTEE MEMBERS

R. Rand Allingham, M.D. Duke University Durham, NC Claude F. Burgoyne, M.D. Devers Eye Institute Portland, OR Abbot F. Clark, Ph.D. University of North Texas Health Science Center Fort Worth, TX Anne L. Coleman, M.D., Ph.D. Jules Stein Eye Institute University of California, Los Angeles Los Angeles, CA

BrightFocus 2013 Annual Report

James N. Ver Hoeve, Ph.D. University of Wisconsin-Madison Madison, WI Mary Wirtz, Ph.D. Oregon Health Sciences University Portland, OR Darrell WuDunn, M.D., Ph.D. Indiana University Indianapolis, IN

We motivate people We activate ideas We accelerate impact

H e r i t a g e S o c i e ty M e mb e r s

Thank you

to our Heritage Society Members, who have designated BrightFocus or its programs as a beneficiary as part of their estate planning. Ms. Marie C. Ackerman* David & Helen Ain Terry E. & Jan Albrecht Ms. Ethel Strong Allen* Mr. James Anderson Ms. Marie Aslan* Ms. Louise T. Baker* Ms. Mary E. Baldwin Annabell & David Ballard* Ms. Cora Lee Baxter* Ms. Lee Beaulieu David & Jane Bender* Ms. Anna M. Biebel* Mr. George Alfred Billinghurst* Mr. Martin Birnbaum Mr. & Mrs. Edward Blackstad Mr. & Mrs. Donald G. Blakeman Ms. Dorothy Bleimeister Mr. W. Earl Blevins Mr. Alan G. Brice Mr. & Mrs. Woodrow Brooner Mr. William Brown, USAF (Ret.) Ms. Mary Buck Ms. Jean T. Burke Ms. Genevieve M. Casey* Ms. Nadine C. Cavallaro Mr. Dave Chapdelaine Mr. C. L. Cheatham* Mr. James W. Coffman Ms. Marcia Irma Cohn* Ms. Christina Conley* Ms. Betty J. Conyers Ms. Hannah Cooper* Ms. Dorothy Bauer Cornish* Ms. Anne M. Cowan Ms. Wanda Iola Crownover* Ms. Veronica M. Curran* Ms. Lana Dailey Ms. Sharon Davis Ms. Alice Dear Ms. Ruth A. DeBoer Ms. Margaret De La Cuesta*

Ms. Margaret L. Dendy* Mr. Elwin J. Depew* Ms. Audrey Jude DeRenzo* Mr. Frances E. Dickinson* Ms. Jan A. Diehl Ms. Sharon M. Doll Mr. & Mrs. Michael Dolyck Ms. Stephanie Drwal* Ms. Evelyn H. Duffy * Ms. Freda Dunn Mr. John Dunphy Ms. Katryn Eason* Ms. Helen Eberling Ms. Lillian Erenberg* Mr. Herbert C. Evans* Ms. Pat Fischer Ms. Virgie C. Fluhr* Mr. & Mrs. Gerald Follmar Ms. Eva Frigyesi Mr. Marcus A. Garriss Mr. & Mrs. Robert Geiger Mr. John B. Geist Ms. Marie M. Gesicke Mr. & Mrs. Allen Gilla Ms. Janet E. Gillie Mr. & Mrs. Peter Givens (Helen)* Ms. Gloria Glasser Ms. Margaret Goldman Mr. Peter Gormas Mr. John S. Grabowski* Ms. Carol J. Green Ms. Eva Grzelak Mr. John Hall Mr. Morris J. Hecht* Mr. & Mrs. Thomas Herrmann Mr. Everett S. Hilfiker Ms. Ann Hill Ms. Lynn T. Hill Mr. Luther Holbrook Ms. Wilma Sybil Holder* Mr. & Mrs. Gary R. Holstrom Mr. & Mrs. Larry E. Honaker

Ms. Linda Horn Ms. Stella Hyman Ms. Barbara Iglehart Ms. Barbara F. Inamoto Mr. Robert F. Jaeger* Ms. Constance L. Johnson Ms. Zetha Johnson Mr. & Mrs. Kenneth W. Johnston Ms. Sonja J. Jurrissen* Mr. Paul Kallina Mr. David Karen Ms. Julie A. Kaune* Ms. Carol Kennedy Ms. Ann H. King Mr. William F. Klessens Mr. Larry O. Klinger Mr. Jean Alexander Knowles* Ms. Rosalie Kreitzer Mr. & Mrs. Royce W. Ladd Mr. Donald P. Lahey Ms. Nancy Latimer Mr. & Mrs. Jeffrey Lawrence Ms. Carol Leino Ms. Jean M. Lenard Mr. Andre Troy Liverpool Ms. Rosellen Loye-Bucy Ms. Arleen L. Luchtman* Ms. Daisy Lundsten Mr. Neal W. Massey Mr. Ronald W. Massey Ms. Emma K. Madar* Ms. Berthe L. Mangin* Mr. Curt A. Matyas* Ms. Ardella R. May Mr. Carroll William May* Mr. & Mrs. Dan May Mr. John J. Mayes* Ms. Anne M. McKernan* Mr. Vincent A. Miller* Mr. & Mrs. Thomas A. Mills (Phyllis)* Mr. Louis C. Mirabile* Mr. Wayne A. Mueller*

*Heritage members who passed away in the last year and left a bequest to our organization.

Mr. Jean-Albert Najar Ms. Jane M. Newman* Ms. Barbara Nicks* Ms. Margaret Nilsson* Ms. Myrna R. Ogur Mr. Leonard Ralph Olds* Ms. Marjorie A. Orth-Youngblood Mr. Harold A. Ott Mr. Albert Ottinger Ms. Virginia Overdorf Mr. Charles W. Owen Ms. Sara F. Perkins* Mr. Edward Peters Ms. Susan Pettigrew Ms. Julia A. Pitt* Mr. Stanley A. Pitt* Ms. Ruby Poirel Mr. & Mrs. Kenneth Poole Mr. Charles J. Radziski* Ms. Analia Rapoport Ms. Bonnie Rea Mr. Tony Redd Ms. Annabelle Reed* Ms. Iola F. Reeser* Ms. Lillian H. Reeves Kenneth & Ann Reim Trust Ms. Carolyn Reinbold Ms. Doris Ritzi* Mr. Dick Robinson Mr. Rudolph H. Rohlke Ms. Lila Rosengren Mr. Thomas L. Ross Ms. Dorothy Rosso Mr. Grant Rowold* Ms. Lynne Rubin Mr. & Mrs. John W. Ruby Mr. John R. Savory, USN (Ret.) Ms. Dorothy J. Schaffer* Ms. Elizabeth & Mary Schaffer Ms. Pearl G. Schiffman Mr. Alfred J. Schmidiger* Mr. Fred H. Schmidt*

Ms. Catherine W. Scott Ms. Gladys G. Scott Ms. Mary P. Seman Ms. Millie Sherman Ms. Jane M. Simon* Ms. Raymonda Slagle Ms. Nancy P. Smith* Mr. Glenn W. Soholm* Ms. Marjorie Sparks Ms. Barbara Spiegel Ms. Barbara A. Spiegel* Mr. Burton Spiller Ms. Marjorie Stettbacher Mr. Irwin J. Stovroff Mr. Charles Edwin Stricker* Ms. Carolyn I. Sumner Ms. Anne Szafranski Ms. Ursula Taggart Ms. Reba A. Taylor* Ms. May Duane Thomas Mr. & Mrs. Richard Trcka* Ms. Lois Tuly* Ms. Janet L. Tussing Mr. Dale Uppinghouse* Ms. Ellizabeth Urick-Peanamanda Ms. Dorothy M. Vaughn Ms. Elma B. Vlass Ms. Dorothy Waagen Ms. Elizabeth Walker* Ms. Cheryl Watson & Mr. Robert Garrett Mr. Earl Charles Wells* Mr. & Mrs. James Wetzold Ms. Virginia Jane Wilkins* Mr. David B. Williams Ms. Helen Hawk Windes* Mr. Victor Yancey Ms. Martha Zeff* Mr. Charles D. Zern* Ms. Marianne Zimmerman* BrightFocus 2013 Annual Report

BRiGhTfocus BoaRD of DiRecToRs, 2012–2013

CHAIR

Jonathan Rice, Esq. Dobbs Ferry, NY

VICE CHAIR

Ed Schoonveld ZS Associates New York, NY

TREASURER

HONORARY MEMBERS

Grace Frisone J. P. Morgan & Co., Inc., retired Saratoga Springs, NY Michael H. Barnett, Esq. Lieber & Associates, LLC New York, NY Nicholas W. Raymond, USA (Ret.) M&T Bank, retired Silver Spring, MD SECRETARY

Scott D. Rodgville, CPA Gorfine, Schiller & Gardyn, PA Owings Mills, MD June Kinosh*ta Facioscapulohumeral Muscular Dystrophy Society Waltham, MA Judith Lee J. P. Morgan & Co., Inc., retired Nantucket, MA

Paul A. Greengard, Ph.D. Nobel Laureate New York, NY Stanley B. Prusiner, M.D. Nobel Laureate San Francisco, CA

Better Business Bureau The Wise Giving Alliance of the Better Business Bureau has recognized BrightFocus Foundation as an accredited charity for having met all 20 of the Alliance standards. Accreditation criteria include fundraising practices, informational materials, and how well the organization spends its money. Valued Partner

OUR SENIOR MANAGEMENT TEAM PRESIDENT & CEO

Stacy Pagos Haller VICE PRESIDENT OF PUBLIC AFFAIRS

Diane I. Marcello Sunnyside Health Services Sarasota, FL

America’s Charities BrightFocus Foundation is a member of America’s Charities, which helps the nation’s most trusted charities thrive by generating sustainable income through workplace giving.

Exchange PARTNERS IN TRUST

GuideStar GuideStar Exchange has recognized BrightFocus Foundation as a Partner in Trust for our comprehensive reporting of organizational information on the GuideStar site. The Exchange promotes transparency and the sharing of knowledge about nonprofit groups.

Michael Buckley

VICE PRESIDENT OF DEVELOPMENT

Donna Callison Henry J. Pownall, Ph.D. Houston Methodist Research Institute Houston, TX Brian K. Regan, Ph.D. New York-Presbyterian Hospital and Healthcare System, New York, NY

BrightFocus 2013 Annual Report

VICE PRESIDENT OF FINANCE AND ADMINISTRATION

David Marks, C.P.A., APR

VICE PRESIDENT OF SCIENTIFIC AFFAIRS

Guy Eakin, Ph.D.

Maryland Nonproﬁts BrightFocus Foundation is one of only 80 nonprofit organizations, of the 24,000 in Maryland, to have achieved the requirements of the Maryland Nonprofits’ Standards for Excellence certification. The award promotes ethical practices and accountability in nonprofit organizations across the state.

the brightfocus mission statement

BrightFocus Foundation seeks to save mind and sight by funding innovative research worldwide and by promoting better health through education.

One in 16 Americans, age 40 and above, lives with a life-changing, incurable disease aﬀecting mind and sight. Investing in cutting-edge research is our best hope for ﬁnding a cure. We are dedicated to innovative research and educating the public through our three programs: Alzheimer’s Disease Research Macular Degeneration Research National Glaucoma Research

Visit us toDaY

www.brightfocus.org

Programs Alzheimer’s Disease Research Macular Degeneration Research National Glaucoma Research 22512 Gateway Center Drive Clarksburg, MD 20871 Toll Free (800) 437-2423 Office (301) 948-3244 Fax (301) 258-9454 [emailprotected] www.brightfocus.org Connect and Share www.brightfocus.org/connect _BrightFocus Copyright © 2013 BrightFocus Foundation

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