Simone is passionate in finding a cure for NF and he is actively involved in various CTF research initiatives and projects. He is our first board member based in Europe, reflecting the global nature of CTF research.
Simone is an Italian citizen living in Zurich, Switzerland, where he works as HR Director for Swiss Re, a leading wholesale provider of reinsurance, insurance and other insurance-based forms of risk transfer. He previously held various senior HR positions in the financial and biotech sectors.
He grew up in Sardinia (Italy) and lived in Portugal, Ireland, and for the last 8 years in Switzerland. He is a psychologist by education and he has an Executive M.B.S. in Human Resource Strategies at DCU College in Dublin.
Simone and his wife, Giovanna, have two kids, Diego and Elisa.
Volunteer Leadership Council Chair
Renie Moss lives in Birmingham, AL with her husband of 16 years, Philip Sr. and two children, Philip Jr. (12) and Helen (9). Philip Jr. was diagnosed with NF1 in 2011 when a plexiform tumor was discovered in his neck. Following her son’s diagnosis, Helen and Philip Sr. were both diagnosed in 2013. With three family members, all diagnosed with the same NF1 mutation, only Philip Jr. is acutely affected with an inoperable plexiform tumor. He is currently enrolled in the MEK (selumetinib) trial through the National Cancer Institute and after two years, his tumor is now 50% smaller.
Renie is an avid advocate for the neurofibromatosis community and the scientific and medical leaders dedicated to finding effective treatments for this incurable condition. She currently serves as the chair of the Children’s Tumor Foundation (CTF) Volunteer Leadership Council and is the patient liaison to the Synodos NF1 Consortium. She has chaired the Alabama NF Walk since 2014 raising over $180,000 for clinical research and patient support. She has also served as co-chair of the CTF Advocacy Task Force, cultivating congressional leadership support for federally funded NF research. Local to Alabama, Renie provides patient and family perspective by serving on the University of Alabama at Birmingham (UAB) NF Clinic Patient Advisory Board and the UAB Genetic Counseling Program’s Advisory Board.
After almost 20 years in higher education as a student affairs administrator, Renie shifted careers in early 2017 to become program director at UAB for the Alabama Genomic Health Initiative, a state funded genomic population study to identify individuals with high risk of genetic disease and to provide a basis for continuing research into genetic contributors to health and disease.
Renie graduated from Vanderbilt University with a degree in English and holds a master’s degree in education from University of Alabama at Birmingham. She is an active volunteer in her children’s schools, Girls scouts and Boy scouts, as well as their church, Mountain Brook Community Church.
Dr. Richard Soll is Senior Vice President, Research Service Division (RSD), at WuXi AppTec and leads the WuXi offices in Cambridge, Massachusetts and in Israel to bring WuXi’s comprehensive platform of integrated R&D services closer to innovative companies and entrepreneurs in the world’s two leading biotech hubs.
Dr. Soll’s contributions to drug discovery and development led to the discovery of the HCV breakthrough therapy elbasvir, the JAK2 inhibitor fedratinib, and more than 10 other clinical stage drugs. Dr. Soll has co-authored more than 100 patents and papers. Dr. Soll serves on the board of the Accelerator has been an SAB member to biotech companies and advisor to entrepreneurs.
Prior to WuXi, Dr. Soll was CSO and VP of R&D at TargeGen where he led multiple clinical stage R&D programs. Dr. Soll founded the chemistry department at 3-Dimensional Pharmaceuticals as VP of Chemistry. Dr. Soll began his industry career at Wyeth Pharmaceuticals, and was trained as a synthetic chemist at Dartmouth and Harvard.
Michael Peterson is a television writer and producer currently on the CBS hit show BULL. Prior to BULL, he worked at FOX where he wrote numerous episodes of BONES, one of the longest running shows in television history, and eventually was the showrunner for BONES in its final years. In one episode, titled “The Doll in the Derby” Michael prominently featured neurofibromatosis and The Children’s Tumor Foundation in an effort to help spread NF awareness to millions of viewers. Michael is also a feature film screenwriter who has sold projects to Paramount Studios, Dimension, MGM and Oscar-winning director Francis Ford Coppola.
Michael attended the University of North Carolina at Chapel Hill and graduated from the Kenan-Flagler school with a B.S. in Business Administration while also producing his own TV show for student television.
Michael and his wife, Kelly, live in Los Angeles, California and are blessed with two children. Their daughter was born with congenital pseudoarthrosis of the tibia as a result of NF1. She bravely endured eight major surgeries before she was six years old.
For the past five years, Michael, Kelly and their entire extended family have dedicated themselves to helping The Children’s Tumor Foundation. Every year, they participate in the Los Angeles NF Walk, and their team has been the top contributor the past four years running. Additionally, they have organized their own fundraisers, including a stand-up paddle event in Oregon called “Stand Up to NF” and a “Where the Wild Things Are” themed party back in North Carolina.
Annette Bakker, the Children's Tumor Foundation's President and Chief Scientific Officer, holds a PhD in cell biology from the University of Antwerp. Her past experience includes serving as Oncology Group Leader at Janssen Pharmaceutica, and postdoctoral fellowships at Yale University and La Salpetriere, Paris.
Before joining the Children’s Tumor Foundation, Dr. Bakker served as head of the Oncology R&D department for a biotech company in Siena, Tuscany. While there, she designed and created a neuro-oncology department from the ground up, and managed large oncology research initiatives both nationally (Italian networks) and internationally (European and Asian networks).
Dr. Bakker's research has been internationally recognized by more than 30 peer-reviewed papers, patents, and awards, and she has extensive experience liaising and negotiating with biotechnology and pharmaceutical companies.
In her role at the Children's Tumor Foundation, Annette and her team will continue to build a strong NF community, design and execute innovative business models to accelerate the path from basic discovery to clinical benefit for NF patients, develop partnerships with pharmaceutical and biotech industries, and attract new scientists and funders to the NF field.
Annette is originally from Belgium, and speaks four languages (English, French, Dutch, and Italian). She lives happily in Westchester, NY with her family.
Gabriel Groisman is a husband and a father of four beautiful girls. He spends his days working as an attorney at his own law firm, Groisman Law, PLLC. There, he represents a diverse set of clients in matters primarily related to intellectual property, business and litigation. Mr. Groisman also serves as Mayor of Bal Harbour, Florida.
In addition to his role at CTF, Mr. Groisman serves as a National Board member at the Friends of the Israel Defense Forces (FIDF), and a member of the Dean’s Advisory Council for American University’s Washington College of Law. Mr. Groisman is also a sought after public speaker and Spanish language TV and radio analyst, on the topics of combatting anti-Semitism and Middle East policy.
Bruce R. Korf, MD, PhD, is one of the leading clinical experts and researchers in the field of neurofibromatosis (NF) and has worked with the Children’s Tumor Foundation for over 30 years. He has served as Chair of the Foundation's Clinical Care Advisory Board and as Chair of the Foundation's Medical Policy Committee. He currently serves as Chair of the Medical Advisory Committee and as a member of the Board of Directors of the Foundation.
Dr. Korf is Chair of the Department of Genetics and Director of the Heflin Center for Genomic Sciences at the University of Alabama at Birmingham (UAB). Dr. Korf also holds the Wayne H. Finley and Sara Crews Finley Chair of Medical Genetics at UAB. Before joining UAB, Korf was Medical Director of the Harvard-Partners Center for Genetics and Genomics, a program devoted to integrating genetics into medical practice for major Harvard-affiliated hospitals in Boston.
After receiving undergraduate and medical degrees from Cornell University and a PhD from Rockefeller University, Dr. Korf completed a residency in pediatrics and a fellowship in genetics at Children's Hospital, Boston, as well as a residency in neurology in the Longwood Area Neurology Training Program at Harvard Medical School. He is board certified in pediatrics, neurology (child neurology), clinical genetics, cytogenetics, and clinical molecular genetics.
Dr. Korf is past president of the Association of Professors of Human and Medical Genetics, past president of the American College of Medical Genetics and Genomics, and president of the ACMG Foundation for Genetic and Genomic Medicine. He also has served on the Board of Scientific Counselors of the National Cancer Institute and the National Human Genome Research Institute.
Dr. Korf is the author or co-author of four books and numerous scientific articles, including, Neurofibromatosis: A Handbook for Patients, Families, and Health Care Professionals. He serves on the editorial board of Current Protocols in Human Genetics.
Allan E. Rubenstein, MD, one of the Foundation’s Co-Founders, assumed emeritus status on May 1, 2003, after having served the Foundation as its Director of Medical Affairs for 25 years. During that period, he provided invaluable guidance and leadership in the development of the organization, with dramatic impact on its medical and research programs. His efforts have been a key element in the broader understanding of neurofibromatosis in the medical community. His insights have been, and continue to be, a significant catalyst in the remarkable achievements and successes that have characterized NF research sponsored by the Foundation and elsewhere.
Dr. Rubenstein founded the Mount Sinai Neurofibromatosis Research and Treatment Center. That center was the first interdisciplinary clinic devoted to neurofibromatosis in the world, and has been a model for more than 50 other NF clinics in the US and Europe.
Dr. Rubenstein attended Cornell University as an undergraduate. His medical education started at the University of Rochester School of Medicine, and was completed at Tufts University School of Medicine in Boston. His Neurology specialty training was done at Columbia Presbyterian Medical Center–Neurological Institute in New York City. He is certified by, and was an examiner for many years, for the American Board of Psychiatry and Neurology.
Since completing his education, he has distinguished himself broadly. In 1984, Dr. Rubenstein received the first Friedrich von Recklinghausen Award from the Children’s Tumor Foundation. He has been recognized in Who’s Who in the East and Who’s Who in Science and Technology. He has provided counsel to numerous research and governmental agencies, including the NINDS, the Neurogenetics Study Section of the National Cancer Institute, and the Department of Defense NF Research Program. He is a reviewer for several scientific publications and was a Contributing Editor of the Mount Sinai Journal of Medicine for many years.
Dr. Rubenstein is presently Clinical Professor of Neurology and Pediatrics at NYU Langone Medical Center and CEO of NexGenix Pharmaceuticals, a biotechnology company focused on drug development for neurofibromatosis and related sporadic tumors. He is also the Vice-Chairman and Lead Director of the Cooper Companies (COO, NYSE), a medical products company.
Dr. Rubenstein is married, the father of three, and lives in New York City.
Ed Stern was a private practice attorney in Newtonville, Massachusetts. A sole practitioner in association with seven other attorneys, his practice included representation of major business interests in the public and private sectors, as well as administrative agency and courtroom representation. Other areas of practice included criminal, juvenile, corporate organization, real property, estate planning, and civil representation.
Mr. Stern currently holds positions as an Assistant Dean for Prelaw Advising at Boston University and as a Senior Lecturer at the University of Massachusetts, Boston. He has previously been President of the Massachusetts Funding Group, Inc., a Real Estate Developer at Triangle Development Corporation, an Environmental Engineer for the Federal Water Pollution Control Administration, and a member of United States Army Reserve.
Mr. Stern earned a BS degree in Civil Engineering from Tufts University in 1968, and a JD degree from Boston University School of Law in 1972. He lives in Waban, Massachusetts, with his wife, Ann Swanson Stern, PhD. They have two children, Jared and Jordan Stern. Mr. Stern has been involved with the Children’s Tumor Foundation since 1988 as Pro Bono Counsel to the Medical Advisory Committee.
Alan H. Robbins, MD was formerly President and CEO of the New England Baptist Hospital in Boston, a position he held from 1995 to 2002. He continued there as President Emeritus from 2002 to 2003. With over 30 years of experience in the medical profession, Dr. Robbins is an accomplished clinician, researcher, and executive.
Until 1996, he served as Chairman of the Department of Radiology at New England Baptist Hospital, and Chief of Radiology at the Boston VA Medical Center. During that time he also organized, and was the President of The Boston Imaging Group P.C., which operated a highly successful medical imaging center in Brookline, Massachusetts.
Dr. Robbins’ latest tenure was as Chief Medical Officer of Nomir Medical Technologies Inc., a new enterprise that is built around a unique and remarkable microbe-fighting laser technology, and as a practicing radiologist and member of the diagnostic radiology staff at the Beth Israel Deaconess Hospital in Boston, where he was a member of the Harvard Medical Faculty Practice Group.
In the academic community, Dr. Robbins held the rank of Professor at Tufts University School of Medicine in the Department of Family Medicine and Community Health. The latter appointment reflected his active teaching role in the Tufts Combined MD/MBA Health Management Program.
He has served on many health care committees, foundations, and boards. Prior to becoming an Honorary Member of the Board of Directors of the Children's Foundation, he served five terms as an active director from 1991 to 2006, including the last three years as Treasurer. In recognition of his long and distinguished service, the Board of Directors voted to make him an Honorary Director, where he continues to advise the Foundation on medical issues. He has also served as a Trustee at Lasell College as well as Lasell Village, its affiliated innovative retirement community for seniors.
Dr. Robbins received his MD from Tufts University School of Medicine and his BA from Dartmouth College.
Carolyn E. Setlow is an experienced business executive, market researcher, life and executive coach, and nonprofit volunteer. Until recently, she served as Executive Vice President of GfK Custom Research North America, a member of the GfK Group, one of the five largest market research organizations in the world. She served previously in a senior executive role at the company’s predecessor firms, NOP World, RoperASW, and Roper Starch Worldwide. In addition, she maintains a small private executive and life coaching practice and serves as a trustee of several nonprofit organizations, including the Connecticut Community Foundation.
Ms. Setlow joined Roper Starch Worldwide in 1991. She served as Group Senior Vice President and a Member of the firm’s Executive Committee until the company’s sale in 2001 to NOP World, a division of United Business Media. She consecutively managed Roper’s custom research group, its syndicated consumer insights practice, and its corporate client development and marketing TK. A frequent speaker on consumer insights, for many years she authored a monthly column, “Roper on Retail,” in DSN Retailing Today. From 1988 to 1991, Ms. Setlow served as President of Harris/Scholastic Research, a division of Louis Harris and Associates, Inc., in collaboration with Scholastic Inc., the premier educational publisher.
In 1982, Ms. Setlow joined SetloWear, Inc., a family-owned industrial uniform manufacturing company headquartered in Orange, Connecticut, and was named President in 1983. In 1986, she was responsible for the sale of the company to the Williamson Dickie Manufacturing Company of Fort Worth, Texas, and continued as President during the transition to new ownership.
From 1978 to 1982, Ms. Setlow held the position of Vice President for Corporate Planning of Newsweek, Inc., a division of the Washington Post Company, where she was responsible for the design and management of the company’s strategic planning process.
Ms. Setlow served for three terms (until 2009) as a Member of the Board of Trustees of Human Resources Research Organization (HumRRO) in Alexandria, Virginia. She is currently a member of the Honorary Board of Trustees of the Children’s Tumor Foundation, and from 1999 to 2008, served as a Trustee, as Secretary of the Board, and finally as Chair of the Public Education Committee. She is a Trustee of the Connecticut Community Foundation, and chairs their Program Grants Committee. Ms. Setlow also serves as a pro bono consultant for the Harvard Business School Community Partners. She served for many years as a Member of the Board of the 1165 Park Avenue Cooperative, and is an Honorary Trustee (formerly Chairman of the Board) of the Northside Center for Child Development Inc. in New York City, a Harlem-based mental health clinic. She is currently a member of the Connecticut Chapter of the International Women’s Forum, and formerly a member of the Board of Directors of the New York Chapter, as well as the Committee of 200, two by-invitation-only organizations of accomplished women. Ms. Setlow is a former member of the Young Presidents’ Organization. She formerly served on the Board of Directors of the American Republic Life Insurance Company of New York, the New York Federation of Protestant Welfare Agencies, and the National Council on Aging. She was one of 25 women honored as most influential women in American business in March 2001 by NOW Legal Defense and Education Fund.
Ms. Setlow received a BA degree in History from Smith College in 1968 and an MA degree in Law and Diplomacy from the Fletcher School, Tufts University, in 1970, where she specialized in the field of Public Diplomacy. In 1981, sponsored by Newsweek Inc., she attended the Harvard Business School’s Program in Management Development. In addition, Ms. Setlow has completed coursework (Foundations I and II in Coaching) in Executive and Life Coaching at the New York University School of Continuing Education.
A resident of Washington Depot, Connecticut, she is married to Andrew O. Shapiro, a former publisher of legal newsletters. She is the mother of two sons: Alexander and Daniel Sommer.
Richard Horvitz is Chairman of Moreland Management Company, a closely-held private family investment office. An attorney by training, Mr. Horvitz worked at Baker & Hostetler's Cleveland office before joining his family's operating businesses, since sold.
He has been a member of the Board of Directors of the Children's Tumor Foundation since 1996. He was recently named as a director to Cupid Charities, Inc.
Richard was born and raised in Cleveland, Ohio. He received his AB with honors in Economics from Princeton University in 1975, and received his JD from Duke University School of Law in 1978. He is a member of both the Florida and Ohio bars.
In addition to his work with the Children's Tumor Foundation, Mr. Horvitz serves as an officer and a trustee of the Jewish Federation of Cleveland; as a Life Trustee of the Board of University School (an independent country day school in Cleveland where he also serves on the Investment Committee); and as a member of the University Hospitals Emeritus Leadership Council after serving for 16 years on the Board of Directors of University Hospitals of Cleveland Case Medical Center. Mr. Horvitz is a life member of the Board of Visitors of Duke University School of Law.
Mr. Horvitz is married to Erica Hartman-Horvitz. He has two children, Danielle and Matthew, from his marriage to his late wife, Marcy Rochelle Horvitz, a step-daughter, Ashley, a granddaughter, Arabella Juliet Weiner, as well as another granddaughter on the way.
Michie O’Day is an accomplished artist who lives and paints in Maine. After successful careers in retail management, then nonprofit fundraising, she moved to Stonington in 2000 to devote her life to her art. She now resides in Portland.
NF2 runs in Ms. O’Day’s family. She was diagnosed with it in 1983 and became a member of CTF in 1984. She served on the CTF Board of Directors from 1999 to 2005 and returned as an Honorary Board Member in 2011. She has also testified before Congress in support of NF funding, served as a Consumer Peer Reviewer on the Army Congressionally Directed Medical Research Program for NF, and has raised money for and donated her work to CTF.
Painting brings her a sense of purpose and peace, given the losses caused by NF2. Although deaf and mobility impaired, she lives independently and enjoys an active lifestyle. Her paintings may be seen at michieoday.com.
Dr. Wallace is a professor in the Department of Molecular Genetics and Microbiology at the University of Florida, where her laboratory performs research in NF1 and related conditions. She has been the Chair of the Children’s Tumor Foundation's Research Advisory Board since 2004, co-directing the Young Investigator Award grant program, which provides scientists with two years of salary support plus a travel stipend to attend the NF Conference and other meetings. She has also been a nonvoting Member of the Children's Tumor Foundation Board of Directors since 2005.
Dr. Wallace has been involved in NF research since 1987, focusing on genetics and cell biology of neurofibromas, and has contributed to the field through numerous publications and collaborations. She was also a Member of the Children's Tumor Foundation's Florida Chapter Board of Directors from 1992 to 2006.
Dr. Wallace does not have any family members affected with NF, but she knows many patients and families through her work and the Children’s Tumor Foundation. She is married to Dr. Wayne McCormack, also a former Children’s Tumor Foundation Florida Chapter Board of Directors Member, and they have two children who enjoy participating in Children’s Tumor Foundation fundraising events.
Nate Walker is President of Investors Management Company, Inc., a firm specializing in the property management of multi-family living communities. Since 1984, Mr. Walker, along with his family, has been involved in various aspects of real estate investments, development, and finance.
Mr. Walker has been involved with the Children’s Tumor Foundation and its predecessor, The National Neurofibromatosis Foundation, since 1986. Mr. Walker is past President of the California Chapter, has been on the National Board of Directors since 1992, has served on numerous committees, and was Vice Chairman of the Board from 2006 - 2010. He is committed to finding treatments so that all those living with NF can have a better quality of life.
In 1985, Mr. Walker’s parents created the Steven and Lottie Walker Family Foundation, which is administered by Mr. Walker and his sister. The Walkers live in Encino, CA and have two children, Michelle and Bradley.
David Viskochil, MD, PhD, is Professor of Pediatrics and Director of Clinical Services in the Division of Medical Genetics at the University of Utah.
He received his bachelor’s degree in biology from the University of Arizona, and his doctorate in biochemistry and medical degree from the University of North Carolina in 1985. He completed his pediatric residency and clinical genetics fellowship at the University of Utah Affiliated Hospitals.
Dr. Viskochil’s research has focused on the molecular genetics of the neurofibromatosis type 1 (NF1) gene, and bone health and malignancy in patients with NF1. He performs translational research in NF1-related manifestations, and is the local principal investigator for the NF Clinical Trials Consortium. He is involved in clinical trials for NF1 and lysosomal storage disorders.
He serves as Chair of the Clinical Care Advisory Board of the Children’s Tumor Foundation (national NF support organization), Chair of the Utah State Department of Health Genetic Advisory Committee, and Member of the Advisory Board for the Mucopolysaccharidosis I Registry. He serves as Medical Director for the University of Utah Graduate Program in Genetic Counseling. Dr. Viskochil has an academic clinical practice that includes genetics patients who access care through the Primary Children’s Medical Center, Huntsman Cancer Institute, the University’s Clinical Neurosciences Center, and the Shriners Hospitals for Children.
He shoots hoops and plays golf.
Ken Rudd is a partner at Zeichner Ellman & Krause LLP, a financial services/business law firm headquartered in New York City, with additional offices in New Jersey, Connecticut, and Israel. His law practice focuses on commercial and business litigation, particularly in the financial services space, as well as in regulatory compliance, including internal investigations, with an emphasis on anti-money laundering issues
Ken represents financial institutions in regulatory and compliance matters, with a focus on Bank Secrecy Act and Anti-Money Laundering issues. He also advises clients in responding to grand jury, regulatory, and legislative investigations. He has counseled financial institutions responding to significant investigations conducted by the United States Senate Permanent Subcommittee on Investigations and the Senate Committee on Banking, Housing and Urban Affairs. He also routinely advises clients, including financial institutions, in complex litigation. He provides training to in-house legal teams and other law firms on AML issues.
In addition, Ken represents financial institutions in general commercial litigation, including matters involving allegations of financial fraud, the Uniform Commercial Code, real estate, and a variety of contractual disputes.
Ken was diagnosed with NF1 as a child and was the CTF's NF Ambassador in 2007. He graduated from the University of Virginia School of Law and Amherst College.
Laura Perfetti has been teaching for the Syosset Central School District since 1998. Previously, she taught second grade for two years in Bushwick, Brooklyn. In addition, she implemented and is the Chairperson of P.R.I.D.E., an elementary school character education program. Mrs. Perfetti won the Jenkins Award in 2012 in recognition of her leadership, efforts, and dedication to her school, as well as her work on P.R.I.D.E. Mrs. Perfetti also developed a curriculum in collaboration with other teachers and parents that is used as a model throughout her school district.
Mrs. Perfetti has volunteered with the Children’s Tumor Foundation’s Racing4Research, NF Endurance, and NF Walk programs since 2007. She currently serves as the NYC Half Marathon Team Captain for the NF Endurance Team, a position she has held for three years. Her family has participated in Racing4Research for five years. Mrs. Perfetti started an NF Moms’ Brunch, an information group connecting NF mothers on Long Island. She is also the Patient Representative on CTF’s Clinical Care Advisory Board and the Parent Representative on the currently forming New York Presbyterian Hospital Board. Mrs.Perfetti won the 2012 Women's Trailblazer Award from the Nasaau County Legislature for her work with the Children’s Tumor Foundation.
Mrs. Perfetti chairs several fundraisers every year, including a dinner and auction on Long Island and a backyard carnival in honor of her daughter, Julia Ladybug, who has NF1.
Mrs. Perfetti lives in Glen Cove, New York, with her husband, Anthony, and their four children: A.J., Julia, Jacqueline, and Alexander.
John McCarthy works in the structured finance division of Standard & Poor’s, where he specializes in structured credit products. He has worked in products across the asset-backed securities, asset-backed commercial paper, collateralized debt obligations, and structured credit businesses since 2000. His primary area of focus is in credit derivatives; other derivative products, such as interest rate and currency swaps; and esoteric securitization products, such as timeshare, shipping container, aircraft, stranded cost, catastrophe bond, agricultural commodity, and small business loan securitizations, in addition to collateralized loan obligations.
Prior to joining S&P, Mr. McCarthy worked at Merrill Lynch, at Smith Barney (Shearson Lehman Brothers is now part of Citigroup), and at Hyatt Hotels and Resorts in various compensation and human resources management roles. Mr. McCarthy has an MBA degree from Columbia University and a BS degree from Cornell University.
Mr. McCarthy has been active with the Children’s Tumor Foundation for many years, primarily as a participant in the NF Endurance Team and NF Walk Program through which he has participated in events including the New York City Marathon, the Race Across America, the Jersey Shore Relay, the Antarctica Marathon and Half Marathon, and the Central Jersey NF Walk, among others. He has been a member of the Board of Directors of the Children’s Tumor Foundation since 2009 and currently serves on the Personnel, Public Education, and Fiscal Affairs, Audit, and Investment Committees of the Board.
Mr. McCarthy is married to Florence McCarthy, who has been active with the Foundation for many years, and they reside at the sunny New Jersey Shore with their two daughters, the oldest of whom was diagnosed with NF1 when she was four months old.
Steve McKenzie is the founder and managing partner of Channel West Group, a boutique real estate investment and advisory firm based in Malibu, California. Channel West focuses on commercial property investments in the Hawaii and West Coast markets with an emphasis on hotel and resort properties. Currently, the firm has equity interests in assets located in Los Angeles, Palm Springs, and Honolulu.
Prior to founding Channel West, Mr. McKenzie was a Partner and Managing Director of the commercial real estate investment banking firm Eastdil Secured. He has been active in commercial real estate finance and investments since 1986, and has arranged or participated in over $10 billion of transactions over the course of his career. Significant clients Mr. McKenzie represented in his investment banking career include Cerberus Capital Management, The Blackstone Group, JP Morgan Investment Management, Principal Financial, Prudential, MetLife, and the Federal Reserve Bank of New York.
Mr. McKenzie has been a member of the Board of Directors of the Children's Tumor Foundation since 2008, and currently serves on the development and fiscal affairs, audit, and finance committees of the Board.
Mr. McKenzie is married to Alyson McKenzie and they reside in Malibu, California with their three children, Graham, Andrew, and Sarah Grace. Andrew McKenzie was diagnosed with NF1 as an infant in 1997, and both Steve and Alyson have been active with the Foundation for approximately fifteen years.
Matt Hay is a married father of three who works in sales and marketing at News America Marketing, a single source marketing solutions company owned by News Corporation. He was diagnosed with NF2 during his sophomore year at Indiana University. As a result, over the last 15 years, Matt has dealt with deafness, facial paralysis, vision problems, and balance issues, as well as long recoveries from a spinal surgery, 2 brain surgeries, and 6 eye surgeries.
Mr. Hay deals with NF2 by focusing on what he can do rather than what he cannot. He raises funds for neurofibromatosis research through NF Walks and NF Endurance events, including several marathons, and, most recently, an IRONMAN distance triathlon. Mr. Hay also earned his MBA degree from the Indiana University School of Business in 2010. These accomplishments were things he once thought impossible due to the physical challenges caused by NF2.
Mr. Hay is grateful for CTF’s NF awareness and fundraising work. His involvement with NF Forums and the physicians he has met at those events led him to learning about the auditory brainstem implant (ABI) that allows him to understand speech with the aid of lipreading, and the pre-implantation genetic diagnosis (PGD) procedure that ensured he would not pass NF along to his children.
By staying involved with the NF community and taking part in fundraising walks, runs, and other events, Matt is able to maintain certain aspects of his health that are within his control. He also appreciates the “upward spiral” that he experiences both mentally and physically from interacting with such a supportive community of caring people.
Chad Leathers is the Co-Founder and Executive Director of Cupid Charities, a supporting partner of the Children's Tumor Foundation. Chad's history has revolved around business development, marketing, and NF research for nearly ten years. Cupid Charities creates and hosts Cupid's Undie Run, which takes place in more than 40 cities worldwide and raises funds for CTF.
Chad and Cupid Charities have hosted more than 50,000 runners and raised more than $7 million for the Foundation's research initiatives from its inception in February of 2010. Cupid's began as a fundraiser to help Chad's youngest brother Drew fight schwannomatosis, and continues to hold true to its mission to "fund the best NF research."
"The NF family is incredibly lucky to have the leadership of the Children's Tumor Foundation. Productive research takes vision, persistence, and accountability, and with Dr. Bakker at the helm, I am truly grateful for the progress the team is making possible."
Dr. Golfinos, a native New Yorker, completed medical school at the College of Physicians and Surgeons of Columbia University. He then trained in neurosurgery at the Barrow Neurological Institute in Phoenix, AZ with Dr. Robert F. Spetzler. He joined the faculty at NYU in 1995, and has a practice devoted solely to the multi-modality treatment of brain tumors, including primary brain tumors, metastatic tumors, acoustic neuromas, and skull base tumors.
Dr. Golfinos founded the Gamma Knife Radiosurgery unit at NYU, the first of its kind in New York. He holds a joint appointment in the department of otolaryngology, reflecting his close collaboration with the neuro-otologists on acoustic neuromas and skull base tumors. In 2008, the two departments established a dedicated Neurofibromatosis Clinic at NYU of which Dr. Golfinos is the co-Director.
Dr. Golfinos also supervises brain tumor operations at the Bellevue and Manhattan VA hospitals. His current research interests center on clinical trials in neurofibromatosis type 2 (NF2) and clinical research in skull base surgery, as well as radiosurgery. In 2009, Dr. Golfinos became the 4th Chairman of the Department of Neurosurgery at the NYU School of Medicine. The Department under his tenure has doubled in size and is currently ranked as the #7 neurosurgery department in the country by US News and World Report.
Dan Gilbert is Founder and Chairman of Quicken Loans, the nation’s largest mortgage lender. He is also Founder and Chairman of Rock Ventures, the umbrella entity for his portfolio of business and real estate investments, and Chairman of the Cleveland Cavaliers. For the past four consecutive years, the Cleveland Cavaliers have made appearances in the NBA Finals, and in 2016 won the NBA championship. Rock Ventures and its more than 100 affiliated companies across the country employ more than 30,000 team members, including more than 17,000 in Detroit’s urban core.
From 2013 through 2018, Detroit-based Quicken Loans closed nearly half a trillion dollars in home loan volume across all 50 states, and in 2018, for the ninth consecutive year, earned J.D. Power’s highest rating for client satisfaction among all U.S. mortgage lenders.
Dan is also an active investor in fintech, sports-related and consumer direct companies. Dan is a Founder and Principal of Detroit Venture Partners (DVP), a venture capital firm that funds startup and early-stage technology companies and a Founding Partner of Detroit-based private equity group Rockbridge Growth Equity.
In February 2016, Dan co-founded Detroit-based StockX, the world’s first ‘stock market of things’, combining the visible, liquid, anonymous, and transparent benefits of a stock market with the online consumer secondary market.
Dan began moving his Family of Companies to Detroit’s central business district in 2010 in an effort to help lead the transformation of a great American city. In 2011, Dan co-founded Detroit-based Bedrock, a full-service real estate firm specializing in acquiring, leasing, financing, and managing commercial and residential space. Since its founding, Bedrock and its affiliates have invested and committed more than $5.6 billion to acquiring and developing more than 100 properties, including new construction of ground up developments in downtown Detroit and Cleveland, totaling more than 18 million square feet.
In 2009, Dan founded JACK Entertainment, a developer and owner of unique urban casinos in downtown Detroit, Cleveland, Cincinnati and Baltimore.
In September 2013, Dan was named co-chair of the Blight Removal Task Force. The group, appointed by the Obama Administration, published a detailed plan in May 2014 to remove all blighted structures and lots in the city of Detroit.
Dan serves on the boards of the Cleveland Clinic and the Children’s Tumor Foundation. In 2015, Dan and Jennifer Gilbert established the Gilbert Family Foundation and in 2017, formed ‘NF Forward’ to fund cutting-edge research dedicated to finding a cure for neurofibromatosis (NF).
Dan earned his bachelor’s degree from Michigan State University and his law degree from Wayne State University.
William G. "Bill" Brooks is Vice President of HNTB, a transportation engineering and architecture firm, and serves as their Southeast Aviation Leader and Project Director for the architectural design of the new $1.8 billion South Terminal “C” at Orlando International Airport. With over 30 years’ experience, he has worked as a consultant on a wide range of airport, highway, transit, and municipal infrastructure programs, as well as serving as Mayor of the city of Belle Isle, FL from 2001 through 2016. He currently serves as Chairman/President of The Cornerstone Academy, a K-12 life sciences and biotechnology-focused charter school with over 1300 students. He is a past President and Board member of the Florida League of Mayors. A native of Frankfort, KY, he is a graduate of the University of Alabama with a BS in Civil Engineering. He and his wife have three children.
Bill is most proud to serve as a Board member of the Children's Tumor Foundation, which is leading efforts to find treatments and a cure for the genetic tumor disorder neurofibromatosis (NF), which affects his daughter and millions worldwide.
Suzanne Earle is Owner and Vice President of Earle and Associates, a family owned real estate appraisal and brokerage firm in St. Petersburg, Florida since 1981.
Ms. Earle has been a member of the Board of Directors of the Children’s Tumor Foundation since 2001. She currently serves on the Community Relations, Planning, Legal Affairs and Ethics, and the Medical Advisory Committees. Past positions held with the Foundation include President, Florida Chapter 2001-2005; President, Chapter and Affiliate Council 2001-2005; Secretary, Board of Directors of the Children’s Tumor Foundation 2004-2006; and Chairperson, Board of Directors of the Children’s Tumor Foundation 2006-2010.
In addition to her work with the Children’s Tumor Foundation, Ms. Earle has served as Chairperson and member of the Board of Directors for Canterbury School of Florida, Racquet Club of St. Petersburg, Community Health Charities of Florida, and the Junior League of St. Petersburg. She continues to serve her community through volunteer work with local agencies and foundations.
Ms. Earle is married to James T. Earle, II, and they have two daughters, Erin and Emily. All live in St. Petersburg, Florida. Her oldest daughter, Erin, was diagnosed with NF2 in 1990 at the age of 12. She and her family have also been actively involved with the Foundation’s NF Endurance Team and Cupid’s for many years through Team Earle.
Ms. Earle has been involved with the Foundation in a variety of capacities since 1994. She considers it an honor and a privilege to help the organization accomplish its mission of ending neurofibromatosis through research.
Rob Brainin is a Senior Life Sciences/Healthcare Executive in Boston, MA. He is currently the Chief Executive Officer at WuXi NextCODE, a company focused on making genomic information actionable across a number of contexts, including rare disease. Prior to his current role, he served as the Vice President and General Manager of the Life Sciences and Applied Genomics Business at Illumina, a leading global genomics company. Prior to that, Mr. Brainin was Vice President/General Manager of the Enterprise Genomics Solutions business of Thermo Fisher Scientific, Inc. He joined Thermo Fisher via its acquisition of Life Technologies, Inc. in 2014. From 2004 to 2014, Mr. Brainin served in a number of positions at Life Technologies and its predecessor Invitrogen, predominantly leading a variety of large businesses including the Molecular & Protein Biology Business.
Earlier in his career, he was a management consultant at McKinsey & Co. He has also served as an adjunct professor at University of San Diego School of Law. He received his Bachelor of Arts degree in Economics, magna cum laude, from Emory University in 1993 and received his Juris Doctor degree, cum laude, from Harvard Law School in 1996.
Mr. Brainin and his wife, Nicola Kean, have three children: Kendall, Charles, and Elle. In early 2015, Elle was diagnosed with NF2 at the age of 5.
Daniel T. Altman is a Partner at Belkin Burden Wenig & Goldman, LLP, an approximately 50- attorney real estate boutique law firm located on Madison Avenue in New York City. As Chair of the firm’s Transactional Department, he is a leading practitioner of transactional real estate law and has extensive experience in leasing, conveyancing, financing, and cooperative and condominium matters. Mr. Altman has drafted and negotiated store, office, retail, restaurant, triple net, ground, telecommunications, and loft leases on behalf of both owners and tenants, covering hundreds of thousands of square feet of leased space in office buildings, malls, strip centers, and residential and commercial buildings.
Mr. Altman also acts as counsel to many cooperatives and condominiums, advising them on their day-to-day affairs, including shareholder disputes, maintenance issues, mortgage refinancings, reviewing contracts with vendors, and enforcement of obligations under property leases. Mr. Altman is a member of the New York State Bar Association and serves on its Commercial Leasing Committee. He also is an associate member of the International Council of Shopping Centers (ICSC). Mr. Altman is admitted to practice law in New York and Connecticut.
Mr. Altman recently has represented Union Square Hospitality in their expansion of their Shake Shack franchise throughout the Northeast; Bovis Lend Lease in the negotiation of numerous office and site leases across the country; The Trump Organization in the opening of their Las Vegas and Chicago properties; Lenox Hill Hospital in the disposition and sale of hospital properties; Acadia Realty Trust in the conversion of property to commercial condominiums; and Imperial Parking Corp. in negotiating garage leases in the New York Metropolitan area.
Mr. Altman has been a CTF Board Member for several years; he has served as Board Vice Chair, has chaired the Government Relations Committee, and is currently on the Development Committee, Legal Affairs Committee, and Leadership Development Committee.
Mr. Altman became involved in CTF by establishing Jessica’s Team, named after his daughter, Jessica, who lives with NF1. He spearheaded the start of CTF’s New York City Marathon team in November 2004 and has since successfully completed three New York City Marathons.
Mr. Altman was born and raised on Long Island, New York, where he currently resides in Jericho. In addition to running, he is an avid golfer and skier. Mr. Altman is married to Robin, his wife of twenty-one years, and has three children, Corey, Scott, and Jessica. He earned his JD degree from Brooklyn Law School and graduated magna cum laude with a BS degree in Business Administration from the State University of New York at Albany.
Stuart Match Suna is co-owner, along with his brother, Alan Suna, of Silvercup Studios. Well known for its iconic sign visible from the East River, Silvercup Studios has been home to famed television productions, including Sex and the City and The Sopranos, 30 Rock, Gossip Girl, as well as dozens of major motion pictures including When Harry Met Sally and The Devil Wears Prada, and hundreds of commercials.
Current productions at Silvercup include Girls, Elementary, Madam Secretary, and Mister Robot. Founded in 1983, Silvercup Studios currently operates more than 400,000 square feet of studio space in two facilities in Long Island City and one in the Bronx.
Stuart is a trained architect and experienced real estate developer of more than 2,000 residential units throughout NYC, as well as 500,000 square feet of commercial space. He also is a principal in Metro Management Development, a real estate management firm with more than 25,000 units in its portfolio.
Playing an integral role among numerous television and film production industry organizations, Stuart is a founder and Chair of the Hamptons International Film Festival, and Vice Chair of The New York Production Alliance. He has lobbied successfully in support of tax incentives that retain and attract production work in New York State and New York City.
Among his other cultural affiliations, Stuart is President of Socrates Sculpture Park in Long Island City and Vice Chair of the Museum of Moving Image.
Stuart is a board member for a number of influential business and civic groups, including the Real Estate Board of NY and the Partnership for NYC. Lastly, he is Chair Emeritus of the Children’s Tumor Foundation.
Tracy Galloway graduated from the University of South Carolina in 1987 with a dual major in Finance and Statistics. Her career has involved marketing support for engineering firms, financial institutions, and Galloway Promotions, Inc., her husband, Mark’s, family company.
In 1997, the Galloways sold Smilemakers, Inc., another family firm, and moved to Lake Norman, North Carolina, where they raised their two children, Mitchell, a recent corps graduate of Virginia Polytechnic Institute and now a 2nd Lt. in the Air Force, and McKinnon, who attends the University of North Carolina at Charlotte. During this time, Ms. Galloway became very involved with several charitable organizations, with the majority of her time being devoted to their children’s school, Cannon, where she served on several committees, including fundraising and capital campaigns.
In 2008, Ms. Galloway’s daughter, McKinnon, was diagnosed with NF2. Since that time, Ms. Galloway has relentlessly pursued advanced treatment options and better patient/clinician education, promoted networking among NF2 organizations and families, and lobbied in Washington, DC, for funding. The Galloway family has contributed to several medical trials at Fox Chase Cancer Center and the House Research Institute. They were also fundamental contributors to the current Avastin trial for NF2 at Johns Hopkins and Massachusetts General Hospital, and are founding supporters for Synodos for NF2.
Mr. Stanicky currently serves as Managing Director, Global Equity Research at RBC Capital Markets, focusing on the specialty pharmaceuticals sector, and has spent almost 15 years in equity research covering healthcare stocks. He previously served in senior roles at Goldman Sachs and Canaccord Genuity.
His prior coverage experience within the healthcare sector has been broad, spanning specialty pharmaceuticals, the healthcare supply chain, contract research, and healthcare technology. Prior to that, he followed healthcare stocks on the buy side at Citigroup Global Asset Management.
Rachel B. Tiven is the CEO of Lambda Legal, the oldest and largest legal organization advocating for lesbian, gay, bisexual, and transgender people and those living with HIV/AIDS. Prior to Lambda Legal, Ms. Tiven ran two other non-profit organizations: Immigrant Justice Corps and Immigration Equality. Ms. Tiven is a graduate of Harvard-Radcliffe College and Columbia Law School.
She served as a law clerk to the Honorable Barbara S. Jones in the Southern District of New York, is a recipient of Columbia’s Public Interest Law Foundation award, a New York County Lawyers Association Public Service Award, and was named one of the Advocate Magazine’s 40 Under 40.
Ms. Tiven has been a member of the Children’s Tumor Foundation board since 2010. She is proud to bring her nonprofit leadership experience to the search for good treatments for people with NF.
Linda Martin is a Partner in the Litigation Department of Freshfields Bruckhaus Deringer US LLP in New York City, with extensive experience resolving commercial conflicts in a broad range of industries and practice areas for her Fortune 500 clients through litigation, arbitration, and negotiation. Her clients are global in scope, and she has represented and advised them in all stages of business dispute resolution, both within the United States and across international borders. Prior to joining Freshfields, Ms. Martin was a Partner at Simpson Thacher & Bartlett LLP in New York which she first joined in 1996.
Ms. Martin has been a member of the Board of Directors of the Children's Tumor Foundation since 2007. She was elected Chairperson in 2014 and served until the fall of 2016. Prior to that time, she served as Vice Chairperson (2012-2014) and Secretary (2008-2012) of the Board, and as chairperson of the Foundation’s Legal Affairs and Ethics Committee (2008-2014).
In addition to her work with the Children's Tumor Foundation, Ms. Martin is Immediate Past President of the Board of Directors of the Law Alumni Association of Duke University School of Law, and an Immediate Past Co-Chair of DukeNY. Ms. Martin received her Bachelor of Arts, cum laude, from Harvard University, and received her Juris Doctorate, cum laude, from Duke Law School, where she was an editor for the Duke Law Journal.
Ms. Martin has three sons, Brian, Tim, and Kevin. Her youngest son, Kevin, was diagnosed with NF1 in 2000. She has been actively involved with the Foundation in a variety of capacities since that time.
Our Board of Directors guides the Foundation's mission, sets policies, monitors progress of NF research, and provides oversight and direction.