Genius: Someone who is dazzlingly skilled in any field “I am” by Christiane Benson 3rd grade assignment

Christiane believes in her own . We want to recognize yours. Your talent, creativity, generosity – your unique genius – is what created and propelled the foundation. This report reflects the cumulative of our community. Thank you!

Dear Friends,

As Beyond Batten Disease Foundation celebrates its fifth anniversary, we are taking this opportunity to reflect on our accomplishments and celebrate our progress. We also want to recognize you, our friends and supporters, who have made our success possible.

As we enter the next phase in the life of the foundation, we want to acknowledge how far we have come in a very short time and provide an update on the research and discoveries your contributions have funded. Inside this comprehensive progress report you will find highlights of some of our proudest accomplishments from the past five years. Your donations are being thoughtfully and carefully spent on promising research and are being leveraged through collaborations and partnerships to secure more funding for our strategic research plan. Where little was known about the disease before, there are now incredible developments, insights and discoveries happening every day. Because of your , we have hope. We will continue to build on these milestones until we have a cure.

Our goal is that the work we are doing and the success we are having honors your involvement and that you will continue to support the foundation. Congratulations and Happy Anniversary BBDF! Here’s to another great year.

All the best,

Mary Beth Kiser President and CEO WHAT IS BATTEN DISEASE? THE PROBLEM Juvenile Batten disease, also known as Juvenile On average it takes $1.3 billion dollars and 12 years to Neuronal Ceroid Lipofuscinoses (JNCL), is a rare, shuttle basic discovery down the drug devel- fatal, inherited disorder of the nervous system that opment pipeline to a clinical trial. Very few medical begins in childhood. The condition initially causes research groups have had success and rare diseases blindness and seizures, progressively impairs mental are not getting cured. This is due in large part to a and physical capacities, and then ultimately lack of funding, infrastructure and resources. results in death during the late teens or 20s.17 OUR PLAN OUR MISSION In an effort to overcome obstacles that have ham- Beyond Batten Disease Foundation (BBDF) was pered other organizations, the foundation took a criti- established to eradicate Batten disease. We seek cal look at the best practices of nonprofit groups that to accomplish our mission in two ways: are successfully finding treatments, and discovered six key elements of success. 1. Diagnosis and Prevention: Develop and com- mercialize an easy and inexpensive blood test We have developed a comprehensive research strat- to detect mistakes in the DNA that lead to egy that incorporates all six key elements of success Batten and hundreds of other rare, devastating, that informs everything we do. Our efforts have in- genetic diseases that claim the lives of thou- creased the average grant for Batten disease research sands of children each year. from $40,000 to $100,000, raising awareness of 2. Treatment and Cure: Raise awareness and and interest in the disease. We have implemented a money to accelerate research to create treat- thoughtful, deliberate and strategic approach to fund- ments and to find a cure for Batten disease. ing research. We have instituted an objective review process to ensure that all grants have potential for treatments. By hiring experts, consulting and collabo- rating with like-minded groups such as the American Academy of , other neurodegenerative disease foundations, and other Batten families, we are pooling the resources and funding necessary to drive treatment-based research. For us, there will only be one clear measure of success: providing treatments and a cure for Batten disease.

Our efforts have increased the average grant for Batten disease research from $40,000 to $100,000 The Benson family

6 KEY ELEMENTS OF A STRATEGY

1. Raise the standards of university based 4. Strategic placement of funds to initiate research drug target research growth capable of leveraging MAJOR funding 2. Invest in drug discovery 5. Access to experts across the continuum in each 3. Incorporate cutting-edge methods step of the drug development pipeline and create platform 6. Partner, partner, partner MEET OUR BOARD THE PROGRESS OF When the foundation was created in 2008, there was still very little known about JNCL. Juvenile Batten disease was first described over 180 years before, but Mark B. Chandler, PhD BBDF Founding Director because rare disease research is woefully underfunded, Chairman and Chief the gene causing the mutation wasn’t discovered until Executive Officer, 1995. 14, 15 With no known treatment and no cure, the path Biophysical Corporation ahead looked long and bleak. Thanks to your contin- ued support and generous contributions we were never alone on our journey. With your help, the foundation has Forbes Magazine named Dr. Chandler the made great progress toward our goal of eradicating Bat- “Indiana Jones” of medical research in a 1994 ten disease. Here are just a few of our proudest accom- article that examined his search through plishments from our first five years: jungles in Southeast Asia and South America for deadly toxins that became cutting-edge 2008 treatments for cancer. In 1982, he founded • Charlotte and Craig Benson establish the foundation Inland Laboratories Inc. to provide plant and after their then five-year-old daughter, Christiane, is bacterial toxins to the medical research diagnosed with juvenile Batten disease. Craig, who community. As president and chief executive works in the world of science and medical research, officer of Inland, Dr. Chandler received the has colleagues with relationships all over the world. KPMG High Entrepreneur of the He and his network are in a unique position to do Year award in 1987. Following the success something. BBDF will serve as a vehicle to raise the of Inland Laboratories, Dr. Chandler chan- funds necessary to support the research essential to neled his interest in discovering new meth- ending this condition. ods to evaluate blood-based biomarkers as important health indicators to found three • Dr. Mark Chandler, Chairman and CEO of Biophysical successive companies to develop innovative Corporation, and Dr. Kyle Janek, Executive biological testing technologies, primarily for Commissioner of Health and Services academic and pharmaceutical research. In Commission, join the BBDF board as founding 1995, he co-founded Luminex Corporation directors. (NASDAQ: LMNX), a company that develops, manufactures and markets innovative biolog- • World-renowned Italian researcher Andrea Ballabio, ical technologies to clinical researchers. Dr. MD, PhD, Marco Sardiello, PhD, and their colleagues Chandler served as chairman of the board discover a genetic program that controls the functions and chief executive officer of Luminex until of lysosomes, the cell’s recycling centers that are 2002. He founded Rules-Based , damaged in JNCL.16 Inc. in 1998 to further identify and develop multi-analyte testing protocols, where he continues to serve as founding director. Dr. Chandler now leads Biophysical Corporation as chairman and CEO to make this testing di- rectly available to consumers and physicians.

Dr. Chandler received his doctorate in $12+ immunology from the University of Texas Southwestern in Dallas, Texas. He serves on the Board of the East- million West Institute, the National Center for Ge- in research funding over nome Resources, and is a fellow of the 5 years through donations, -based Explorer’s Club. co-funding and partnerships. 2009 MEET OUR BOARD • February 28, 2009 is named Batten and Rare Disease Day by Texas Governor Rick Perry.

Kyle Janek, MD BBDF Founding Director Executive Commissioner, OVER Texas Health and Human Services Commission

90% Dr. Kyle Janek was appointed Texas Health of foundations never make it to the $1 million mark and Human Services executive commissioner necessary for real and on Sept. 1, 2012, by Gov. Rick Perry. As head permanent change. of the Texas Health and Human Services Commission, Dr. Janek provides leadership • Giving : Cherie and Jim Flores donate and strategic direction to the health and $2 million, the biggest gift in Batten disease research human services system in Texas. The execu- history, and BBDF contributes $500,000 to establish tive commissioner oversees the operations laboratories for Drs. Ballabio, Sardiello and their of the five health and human services agen- colleagues at the Jan and Dan Duncan Neurological cies, including more than 56,000 employees Research Institute of Texas Children’s Hospital. and combined annual budgets of $30 billion, serving more than 4 million Texans. • Missy and Wayne Herndon establish the Will Herndon A lifelong Texan, Dr. Janek was born and Fund at Beyond Batten Disease Foundation to raised in Galveston. Kyle served as a Texas join forces to raise funds for a cure after their son, Will, lawmaker from 1995 to 2008. After eight is diagnosed with JNCL. years in the Texas House of Representatives, he was elected to the in 2003. During his tenure, Dr. Janek juggled a broad range of responsibilities, including the Com- mittees on Finance, Business and Commerce, Education and Health and Human Services. Most recently, he was chairman of the Senate Subcommittee on Emerging Technologies and Economic Development.

Dr. Janek received a bachelor’s degree and graduated magna cum laude from Texas A&M University in 1980. He went back to his home- town to attend medical school at the Uni- versity of Texas Medical Branch in Galveston. After earning his medical degree, he took a residency in anesthesiology at UTMB, where he served as chief resident his final year. A board-certified anesthesiologist, Dr. Janek The Herndon family has been in private practice since 1986. • Craig Benson joins the board of Batten Disease Dr. Janek has been a sponsor of medical Research and Support Association (BDSRA) to missions to Central America and has been an promote partnerships and further collaboration active sponsor of numerous civic and com- efforts with affected Batten families. munity organizations. He and his wife, Shan- non, live in Austin and are the proud parents of three sons. 2012 • BBDF, in partnership with BDSRA, designs a state of the art scientific merit review process utilizing objective experts that ensure every research grant 95% proposal we fund includes the potential for of medical research drug treatments.

foundations in the • The foundation hosts Date Night with Keith U.S. lack full-time Urban, bringing international exposure and raising scientific leadership. over $800,000 in donations.

• Meet our Scientific : BBDF hires full- time neurobiologist, Danielle M. Kerkovich, PhD, to determine the “State of Science,” a comprehensive repository of JNCL research studies throughout history. By identifying gaps in our understanding she is able to design a plan for clinical trials that starts with the most promising research available and avoids repeating past efforts.

• The foundation, in partnership with the Alzheimer’s Drug Discovery Foundation, BDSRA, and NCL-Stiftung sponsors a conference focused Date Night Co-chairs Shannon Janek and Sabrina Brown exclusively on drug discovery in Batten disease. with Keith Urban This meeting forges new collaborations • The Will Herndon Fund and their community in The between academic scientists and drug discovery Woodlands, Texas raises over $1 million for Batten experts who turn research findings into therapy. 17 disease research.

2010 - 2011 • BBDF hosts the inaugural Run to the Sun Relay. The event was inspired by Lance Thompson, who continues to chair the relay annually. His dedication and support allow the event to be an ongoing fund- raising success, raising almost $700,000 in donations.

Will Herndon Fund Hope Volunteers with Will

“The American Foundation is honored to co- sponsor the 2013 Clinical Research Training Fellowship in Juvenile Neuronal Ceroid Lipofuscinosis with Beyond Batten Disease Foundation. By leveraging collaborations with other foundations to support Run to the Sun Chair Lance Thompson with Christiane the careers of promising young researchers, Beyond Batten Disease Foundation is using its energies and • The foundation delivers a grant to King’s College resources to have the greatest possible impact on London researchers to explore new drug targets that research that will improve the treatment of patients improve brain function in JNCL. with Batten disease.” — Dr. Robert Griggs, Chair of the American Brain Foundation Research Committee 2013 MEET OUR BOARD • The foundation hires Mary Beth Kiser as executive director to lead the organization.

• Preliminary data made possible by BBDF funding leads to multiple additional grants totaling over $3.2 million for Batten disease research. Cherie Flores BBDF Board Member • The foundation’s scientific merit and translational review process leads to almost $2.1 million in collaborative research funding from Ireland, Cherie is the third daughter of Don and Ruby Great Britain, Germany, Finland, Belgium, Cherie is the third daughter of Don and Ruby Hair and is married to Jim Flores. She grad- Australia, Denmark and the US. uated with a Bachelor of Science degree in Marketing from Louisiana State University, Research discoveries where she and Jim endowed the Flores MBA funded by BBDF result in School, to provide business education for future generations. $25 million The Floreses are generous supporters of in additional funding from many charitable organizations in the Hous- pharmaceutical companies ton community, including Baylor College of for other diseases, Medicine, MD Anderson and the Texas Heart Institute enhancing the global Institute for ground breaking research and excellencefor ground inbreaking patient researchcare. Also and special excellence to effort to cure rare disease. Cheriein patient and care. Jim isAlso the specialTexas Children’s to Cherie Hospiand - tal,Jim specificallyis the Texas Fraser Children’s Friends Hospital, and the specifical Jan and- • Beyond Batten Disease Foundation, the Alzheimer’s Danly Fraser Duncan Friends Neurological and the Jan Research and Dan Institute’s Duncan Drug Discovery Foundation and the National MS researchNeurological of Batten Research and Institute’sother children’s research neuro - Society collaborate to support the creation of a logicalof Batten challenges. and other children’s neurological shared repository between 11 drug discovery centers. challenges. Cherie and Jim are very active supporting and This gives Batten researchers access to thousands volunteeringCherie and Jim at areSt. John’svery active School supporting where Jim and of neurological drug compounds to test for efficacy in servedvolunteering as a Trustee. at St. John’s Cherie School also serves where asJim a JNCL, saving millions of dollars and precious time in Museumserved as of a FineTrustee. Arts CherieTrustee, also Rienzi serves Collec as a- the drug development process. tionsMuseum committee of Fine Artsmember Trustee, and RienziTrustee Collec on the- Universitytions committee of Texas member Fine Arts and Advisory Trustee onCouncil the • Jeff Hunt and Cherie Flores join the BBDF board. inUniversity Austin. Cherie of Texas serves Fine onArts the Advisory Hermann Council Park • The board conducts a strategic planning session, Gardenin Austin. Center Cherie Advisory serves on Board, the Hermann is a member Park utilizing community stakeholder input, to determine ofGarden the River Center Oaks Advisory Garden Board, Club and is a anmember active the trajectory of the foundation over the next volunteerof the River at OaksBayou Garden Bend. ClubCherie and is analso active a volunteer at Bayou Bend. Cherie is also a 3 to 5 years. sustaining member of the Junior League and ansustaining active member member of of the the Chi Junior Omega League Sorority and foundation.an active member The Flores of the are Chi also Omega members Sorority of St.foundation. Luke’s United The FloresMethodist are alsoChurch. members of St. Luke’s United Methodist Church. In addition to the numerous charitable and philanthropicIn addition to activities,the numerous Cherie charitable is also a andfull- timephilanthropic mother of activities, four children. Cherie is also a full- time mother of four children.

and 12 years to shuttle basic science discovery down On average it takes $1.3 billion the drug development pipeline to a clinical trial.

Practical Trials Target Identification Target Validation Lead Development WeWhere now have we’re 6 atpromising Clinical Trials Post-Launch compounds In 4 years we’re almost 3/4 of the way down the pipeline. The American Institute of Philanthropy reports that the most highly efficient charities spend MEET OUR BOARD 75% or more on programs. BBDF spends Jeff Hunt BBDF Board Member Partner & Co-founder, 84% PulsePoint Group

OUR FOR THE FUTURE Jeff is a partner and co-founder of PulsePoint Group. BBDF is extremely proud of our accomplishments During the course of his 25-year career, Jeff has and the great strides that have been made over the lived and worked in every major region of the past five years. world, counseling CEOs and other top executives We have advanced quickly and more efficiently at numerous multi-national companies including and cost effectively than most other groups. Today, DuPont, IBM, AT&T, Coca-Cola, Johnson & Johnson, we can identify mistakes in the DNA that cause juvenile Batten disease, allowing us to understand McDonald’s and Motorola. He specializes in a range much of what goes wrong in the cells. Researchers of boardroom services, including crisis management are even able to slow the disease in animal models. and preparedness; CEO and CFO communications; However, we know the battle is not over yet. branding, positioning, reputation management and With your support and BBDF funding, researchers social media. His work with Dell, Nike and Whole have identified six potential compounds that may Foods, among others, has kept him on the leading be used to treat children with juvenile Batten dis- edge of the social media space developing programs ease and are looking for more. We are preparing for for everything from customer listening/response clinical trial success by engaging world experts in and corporate blogging to digital influencer relations drug discovery, validation, and approval to ensure we stay on track. With their help and your support, and crowdsourcing. we are building a structure that funnels promising Prior to co-founding PulsePoint Group, Jeff was the research to clinical trials until children and their president of Cohn & Wolfe, a global public relations families no longer have to confront this terrible firm formed following a merger with GCI Group. Prior disease. to the merger, Jeff spent three years as president Our strategic plan for the future builds on these and chief executive officer of GCI Group. He joined accomplishments and continues to integrate the the company following the firm’s acquisition of Read six key elements of success. In addition, our priori- ties will be to: Poland Associates, for which he served as president and CEO. • continue to lead and elevate Batten research • engage donors actively in our mission Before returning to Texas to lead Read-Poland, Jeff • engage all with a passion and interest in had an 18-year career with Burson-Marsteller, ascend- batten and related diseases ing the ranks and ultimately serving as chief operat- • ensure continued strong leadership of the ing officer for Europe, with responsibility for 16 offic- foundation es throughout the continent. In addition, he served Beyond Batten Disease Foundation is committed both in London and New York as vice chairman of to our mission of eradicating Batten disease and Client Services Worldwide. He also established the providing a brighter future for children and families firm’s presence in Korea and , living in each affected by this disorder and hundreds of other rare diseases. country for three years, and ran its Latin America operations out of Miami. With your help, we have accomplished so much, but our work is not done. Please continue to sup- Jeff holds a Bachelor of Journalism, with honors, port us and our research to find a cure for juvenile from the University of Texas at Austin and serves as Batten disease. However you choose to support an adjunct professor at the University’s College of our mission, we need your special . Communications. He also is a frequent guest lecturer To learn more about getting involved, on “managing intangible assets” in the University’s visit www.beyondbatten.org. McCombs School of Business. Jeff is active in civic affairs, serving on the boards of Ballet Austin and For a list of references see www.beyondbatten.org/references The Blanton Museum of Art. A MOTHER’S STORY The Blind Vest, by Charlotte Benson

Have you ever wondered what it would be like if there were spontaneous and encouraging words the whole world knew your pain? Would you feel from people we didn’t know. exposed or liberated? Would you be embarrassed or relieved? Would others treat you differently? I Yes, people stared and whispered, but then I realized frankly never gave it any thought until 3 weeks ago that there was more to it than people just respond- when Craig and I took the children to Colorado for ing to Christiane’s handicap. They weren’t whispering their first ski trip. simply because she was blind, but rather because she was skiing in spite of it! The amazing thing was We enrolled Christiane in a program called Chal- that the patience, kindness, and helpfulness of others lenge Aspen, where children with special needs responding to her handicap fostered a sense of grati- are taught to ski. Her instructor, Chloe, had worked tude, humility, and community for us. with children with all sorts of disabilities and turned out to be a perfect choice for Christiane. While So with skis dangling from the chair lift, and a pen- Christiane is not totally blind, her vision is blurry sive gaze at the snow covered evergreens cascading with dark spots; she sees shapes and shadows down the mountain, a new perspective emerged for and struggles to focus on objects up close. Chloe me. What would the world be like if EVERYONE wore asked me how Christiane would feel about wearing a vest inscribed with their own pain and hardship? a fluorescent vest that indicated she was visually impaired. At first I felt exposed and uncertain about Would we complain and be critical if only we knew drawing so much attention to Christiane, but the the burdens and weight others carry, but are perse- obvious necessity to alert other skiers that she was vering in spite of them? skiing with a visual impairment made it an easy decision. So off they went, in matching orange and Would we be more patient in traffic if we knew that green vests, with Christiane’s reading “Blind Athlete” last week the driver ahead of us was the surviving and Chloe’s reading “Guide for the Blind.” I followed passenger of a fatal accident and now driving in behind and watched in awe as Christiane began to spite of it? trust her instructor as she was led down the slope holding on to Chloe’s pole that was extended hori- Would our words be softer and kinder if we knew zontally in front of her. that the grocery store clerk just found out she has cancer, but is finishing her shift in spite of the news? After the first day, Christiane was skiing inde- pendently and following behind Chloe’s out- The last day we were there, I myself could have stretched arms as she slowly called out in the most worn a vest titled “Fearful Mom,” but I found myself soothing and melodic voice, “left turrrn, right turrrn.” pressing on in spite of it. Chloe had to leave early and Garland and Craig had gone back up the moun- I watched them wind their way down through the tain for one last run. As Chloe departed, Christiane bare leafed Aspen trees covered in shelves of snow looked up at me and said, “Come on Mom, let’s go and captured an image of her blossoming confi- down together one last time.” Without hesitation I dence that I will never forget. said, “Let’s do it!” I immediately started reeling from the commitment I had just made. “WHOA, how’s that For the next 3 days, Christiane shuffled in and out going work?” I silently asked myself. I say left, Chris- of ski lines for chair lifts and gondolas, she carried tiane says right, I say up, she says down. We’re talking her skis and she side-stepped down stairs inde- about a fiercely independent child! I mean, I’m not pendently, calling out, “I can do this by myself, an expert skier and certainly not versed in leading a Mom.” We were greeted with empathetic smiles, visually impaired, strong-willed child down the slope, patient helpfulness, and kind gestures from every- but I simply knew we had to do it. one we encountered. The chair lift operators slowed the lift for her to dismount at the top, attendants helped her in and out of moving gondolas, and So, back up we went on the gondola, the whole while I was praying silently that God would lead us and give me the words, skill and leadership to get us down safely. We hopped off the gondola, and made our way to the side for me to help Christiane put her skis back on. With nervous anticipation, I was down on my knees in the snow, snapping her boots back onto her skis, praying that God would cover us with his presence. In that moment, she popped her goggles over her face and with 100% confidence proclaimed, “COME ON MOM!! FOLLOW ME!!” Can you imagine the faces on the bystanders who overheard the child in the blind vest calling out for her mother to follow HER?!!

We made it down safely without incident, and I was reminded and confident of God’s presence, and tickled by His sense of humor.

Don’t you just love the way God surprises us and speaks to us in the most unexpected ways?? Trusting God in difficult circumstances seems to be the best place to find His blessings! I never cease to be amazed at the way He shows up. It is never the way and never the timing we expect it to be, particularly in this in- stance. I surely didn’t expect it to come from Christiane herself. After all, how can He lead our steps if we are not stepping and trusting that He will provide? Leave it to a child to show us how to do that!

Perhaps we should not only trust that He will provide, but trust that the vest we are cloaked in has purpose. Sooner or later, we will find someone else cloaked in the same vest to encourage and love and inspire. Or perhaps, we will inadvertently encourage someone else faced with a completely different challenge.

As for me, losing my vision is not the vest I wear, but I’m inspired nonetheless. I will forever recall the beauti- ful image of my child facing her own challenge, grace- fully gliding down the mountain, trusting, and pressing on in spite of the vest she has been chosen to wear. I am grateful.

To read more, visit Charlotte’s blog at www.beyondbatten.org/category/news/a-mothers-story “As a physician I can tell you this is the kind of

“The idea for this test came to Dr. Mike Spain game-changing and me after wondering what Craig and health initiative Charlotte could have done to thwart this fate. that truly excites Could they have said ‘Let’s get screened for Batten.’ Their physician would have said “Why me. This will be Batten instead of a thousand other different a tool that can profoundly affect the inherited diseases?” and the physician would have been right. The solution was to screen for health of children by preventing the all of them because individually, yes, they’re occurrence of these illnesses that rare. Collectively, they’re not so rare,” said Dr. Mark Chandler. have challenged us for decades. Ten years ago, I would have thought that BBDF initially funded and led the development a world without genetic killers like of a genetic test for over 620 medically devastating rare diseases. The team of Batten, cystic fibrosis and hundreds scientists engaged to create the test at of others was a dream. Beyond Bat- NCGR moved to Children’s Mercy Hospital for ongoing support of the product. The test is ten Disease Foundation is making this in a pre-launch phase, the final step before a reality.” commercial development. — Mehmet Oz, MD, The Dr. Oz Show One beneficial aspect of this test is that it can be used to quickly diagnosis children to determine if they have these diseases. This will end the diagnostic odyssey that, until now, took an average of 2 to 3 misdiagnoses and 7.6 years. Another benefit is that it can prevent the occurrence of Batten and other rare diseases in future generations by allowing parents to partake in family planning screening to determine if they are both carriers of the diseases.

BBDF has collaborated with expert scientists to develop and provide this comprehensive test for physicians. The test was beta launched in 2012 and is currently being used as a diagnostic tool within Children’s Mercy Hospital’s network. The average patient with a rare disease will see We are continuing discussions with several potential commercialization partners and 8 physicians intend for the foundation to benefit financially and get 2 to 3 misdiagnoses from the eventual public launch of the test. before being correctly diagnosed. On average, this takes 7.6 years. Board of Directors T. Craig Benson, Chair Mark B. Chandler, PhD Kyle Janek, MD Cherie Flores Jeff Hunt Pat McClain, Treasurer Mary Beth Kiser, CAE, Secretary

Staff Mary Beth Kiser, CAE, President and CEO Danielle Kerkovich, PhD, Principal Scientist Carolyn Frank, Development Assistant Salt Lick Event, 2010 Lizzy Franey, Development Assistant “We are grateful to have such a powerful transatlantic friend working toward our common goal - to eradicate this brutal disease. We are amazed by the professionalism and the deep impact on research acceleration resulting from the various activities of BBDF” — Frank Stehr, PhD, Executive and Scientific Director, NCL-Stiftung, Germany

Run to the Sun Relay, 2011

Hope on the Green, 2013

Lemonade stand for Batten Disease, 2012 Be a

Facebook.com/BeyondBatten

@BeyondBattten

www.beyondbatten.org Battlin’ Batten Baffin Fishing Tournament, 2012 Founder’s Circle Individuals who contributed $2,500 or more between August 2008 and June 2009 to establish the foundation.

Advanced Business Systems, LLC Mr. & Mrs. Craig Massey Mr. & Mrs. O. Jamil Alam Mr. Terry Matthews Mr. & Mrs. Wick Alexander Ms. Catherine Mayton Alltel Corporation Mattsson McHale Foundation Alvin and Lucy Owsley Foundation Dr. & Mrs. Ralph McDade Mr. & Mrs. Les Ballard Mr. and Mrs. John McHale Mr. & Mrs. Princeton Bardwell Mr. & Mrs. Neal Meinzer Mr. & Mrs. T. Craig Benson Mr. & Mrs. Michael G. Miller Mr. & Mrs. Todd Binet Mr. & Mrs. Scott Mullen Mr. Stephen Black Mr. & Mrs. Kevin Nater Mr. Bob Blumberg Dr. & Mrs. Wayne Newell Mr. & Mrs. Martin Bouygues Mr. & Mrs. John Nicklos Mr. & Mrs. Lance Bozman Mr. & Mrs. Steven Owsley Mr. & Mrs. J.E. Brown Mr. & Mrs. Charles Pace Mr. & Mrs. Jay Brown Mr. &Mrs. R. David Phillips Mr. Bruce E. Butler Mr. & Mrs. L. Walter Quinn Mr. & Mrs. Chris Carrigee Mr. & Mrs. Stephen Reckling Dr. & Mrs. Mark Chandler Mr. &Mrs. Michael Renna Chubb Investment Riggs Benevolent Fund Mr. & Mrs. Earl H. “Skip” Clemmons RLB International, LLC Mr. & Mrs. Christian Creed Mr. & Mrs. Oscar Robinson Mr. & Mrs. Rob Cress Mr. & Mrs. Thomas Ryan Mr. & Mrs. Colby Denison Scurlock Foundation Ms. Darby Denison Mr. & Mrs. Arthur Daniel Sharplin Denison and Denison Mr. & Mrs. Thomas Smith Ms. Sara Dodd Mrs. & Mrs. David E. Snowden Mr. & Mrs. J. Hunter East Mr. & Mrs. David E. Snowden, Jr. Mr. & Mrs. Bill Edwards Mr. & Mrs. Kent Sorrells Ms. April Findlay Dr. & Mrs. Michael Spain Mr. & Mrs. James C. Flores Stella Boyd Smith Charitable Trust Mr. & Mrs. Scott J. Folse Mr. & Mrs. Warren Stephens Mr. & Mrs. William Fowler Ms. Phyllis Stevenson Fox Charitable Trust Mr. & Mrs. Richard Suttle Mr. & Mrs. Sam Goodner TARCO, Inc. Greater Community Foundation Taub Foundation Mr. & Mrs. W. Mark Hamilton The Milforf Wampold Support Foundation Ms. Maxine Hamilton The Tecumseh Foundation Ms. Connie Harter-Sampognaro Texas Our Texas PAC Heartland Community Bank Mr. & Mrs. Lance Thompson Mr. & Mrs. Jeff Hildebrand The Honorable & Mrs. Mike Toomey Mr. & Mrs. Jeff Hunt TxOGA Insurance Company Hunt Family Foundation Mr. & Mrs. Mike Wampold Dr. & Mrs. Kyle Janek Mr. & Mrs. Sumner “Jay” Waring lll Mr. John S. Kean Mr. & Mrs. W. H. Trey Watson Mr. & Mrs. Steve Landers Mr. & Mrs. James Welch Mr. & Mrs. Rob Looney Mr. & Mrs. John Wombwell Mr. & Mrs. Lawrence Maestri Mr. & Mrs. Scott Young Ms. Lisa Magids Mr. & Mrs. Matthew Zell Mr. Maury Magids Zell Family Foundation Mr. & Mrs. Randy Marfin Mr. & Mrs. Richard G. Zepernick Our Supporters Beyond Batten Disease Foundation would like to recognize and thank those who have supported us in our mission to eradicate Batten disease. Our accomplishments over the past five years would not have been possible without you. We thank you for your continued support and . BBDF makes every effort to ensure the accuracy of your listing. Please email any changes or corrections to [email protected]

1379 Family Sports Shop Tiffany Albright Mr. & Mrs. Orlando Alvarez 1-800-Dryclean of The Woodlands The Honorable & Mrs. Alan Albright Jimena Alverde 25 Twenty Melda Alcala Mr. & Mrs. Charles Alvord 31 Roots Clothing and Accessories Liz Alcocer AM Restaurants 3D Oilfield Services & Rentals. LLC Mr. & Mrs. Lee Alcock Mr. & Mrs. Andy Amador A Bientot Mr. & Mrs. Joey Alcorta Peter Amatulli Mr. & Mrs. Brett Abbott Mr. & Mrs. Victor Alcorta Ellen Ambrose Lance Abbott Elizabeth Aldrich American Campus Charities Foundation Renea Abbott David Aldridge Brent Ames Abella Boutique James Aldridge Stephen Ames Jennifer Abernathy Payton Aldridge Mr. & Mrs. Joshua Amezola Courtney Abernethy Nancy Alesch Tom Amiss Margaret Ables Kirsten Alessio Marinel Ammenheuser Mikell Abney Dr. & Mrs. C. Moody Alexander Suzanna Ammenheuser Bridget Aboel-Nil Mr. & Mrs. Al Alexander Mr. & Mrs. Kip Amstutz Nichole Abshire Allison Alexander Mr. & Mrs. Patrick J. 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