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Medical Advisory Committee

The Children’s Tumor Foundation Medical Advisory Committee (MAC) was established to guide efforts to support and fund the most innovative and promising research to cures for all forms of neurofibromatosis. It is comprised of physicians and scientists knowledgeable and active in the field of NF, inclusive of leading clinicians, leading research scientists, and directors of other NF research funding organizations.

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Main Functions of the MAC

Advice to the CTF CSO on strategy

Information and guidance on scientific and clinical research

Perspective on Foundation programs

Review of the Strategic Plan

Advice on funding decisions

Guidance and expert opinion

Current MAC Projects

Ensure maximum alignment between CTF and other NF initiatives

Provide expert feedback on scientific advancements and their potential application to NF

Help in the planning of the annual NF Conference

Ongoing final review of the Young Investigator Award applications, Drug Discovery Initiative Award applications, Contract Award applications and special awards, and Consortia awards

Development and approval of CTF educational materials

Chairs
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D. Wade Clapp, MD, Chair

Indiana University

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Council Members
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Jaishri Blakeley, MD

Johns Hopkins University

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Michael Fisher, MD

Children’s Hospital of Philadelphia, Chair of DOD NF Clinical Trial Consortium

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Nader Fotouhi, PhD

Chief Scientific Officer of the TB Alliance

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Aerang Kim, MD, PhD

Children’s National Hospital

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YooRi Kim, MS

Gilbert Family Foundation

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Bruce Korf, MD, PhD

University of Alabama at Birmingham

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Lu Le, MD, PhD

University of Texas Southwestern

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Eric Legius, MD, PhD

University of Leuven, Belgium

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Andrea McClatchey, PhD

Massachusetts General Hospital

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David T. Miller, MD, PhD

Boston Children’s Hospital, Scientific Director of the Neurofibromatosis Research Initiative (NFRI)

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Helen Morrison, PhD

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Scott Plotkin, MD, PhD

Massachusetts General Hospital

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Edu Serra, PhD

Germans Trias i Pujol Research Institute

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Georg C Terstappen, PhD

Executive Vice President, Drug Discovery, Cambrian Biopharma

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David Viskochil, MD, PhD

University of Utah

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Brigitte Widemann, MD

National Cancer Institute

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Board Liasons
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Rob Brainin

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Tracy Galloway

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Gabriel Groisman

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Richard Horvitz

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Richard Soll

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Edward M. Stern, ESQ

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CTF Staff
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Annette Bakker, PhD

Chief Executive Officer

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Marco Nievo, PhD

Chief Scientific Officer, CTF Europe

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D. Wade Clapp, MD, Chair
Indiana University
Jaishri Blakeley, MD
Johns Hopkins University
Michael Fisher, MD
Children’s Hospital of Philadelphia, Chair of DOD NF Clinical Trial Consortium
Nader Fotouhi, PhD
Chief Scientific Officer of the TB Alliance
Aerang Kim, MD, PhD
Children’s National Hospital

Aerang Kim, MD, PhD is the Associate Professor of Pediatrics and Director of Clinical Research in the Division of Oncology and solid tumors attending at Children’s National Hospital in Washington, DC.

Her research focuses on the development of novel therapeutics for pediatric solid tumors, sarcomas, and NF1 associated tumors, in particular malignant peripheral nerve sheath tumors (MPNST).

She serves as the MPNST disease committee chair for the Department of Defense Clinical Trials Consortium, and leads multiple early phase trials of novel combination therapeutics for MPNST.

YooRi Kim, MS
Gilbert Family Foundation

YooRi Kim, MS is Scientific Officer of the Gilbert Family Foundation, where she is on a mission to find effective treatments for neurofibromatosis type 1 (NF1).  She develops and oversees the Foundation’s research portfolio, which is focused on vision restoration for individuals with NF1 optic pathway glioma, treatment of NF1 brain tumors, and NF1 gene therapies.  Previously, she served as a medical philanthropy advisor at the Milken Institute, helping philanthropists strategically invest in biomedical research in various fields, including neurology, oncology, psychiatry, genetics, and precision wellness.

Bruce Korf, MD, PhD
University of Alabama at Birmingham

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 Emeritus of the Medical Advisory Committee.

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.

Lu Le, MD, PhD
University of Texas Southwestern

Dr. Le is a Physician-Scientist with a scientific and clinical focus in neurofibromatosis. He received his Ph.D. degree in Immunology and Molecular Genetics, and a medical degree (M.D.) from the Medical Scientist Training Program at the University of California, Los Angeles.  He completed an Internship in Internal Medicine at UCLA/St. Mary Medical Center, residency training in Dermatology and a postdoctoral fellowship in Cancer Biology from University of Texas Southwestern Medical Center.  Dr. Le is currently a professor of dermatology at UT Southwestern and he sees patients at its Comprehensive Neurofibromatosis Clinic.

As a principal investigator in cancer biology, Dr. Le’s laboratory investigates how initiating genetic and tumor microenvironmental events interplay to regulate NF1-associated tumorigenesis.  A major contribution of Dr. Le’s laboratory is the generation and exploitation of novel neurofibromatosis models to decipher mechanisms that initiate Schwann cell tumor development and drive their malignant transformation.  His laboratory has identified the cells of origin for different types of neurofibroma, defined developmental window-of-opportunity within Schwann cell lineage for neurofibroma development and delineated vital cancer pathways for its malignant transformation.  These studies have addressed fundamental, unanswered questions in the neurofibromatosis field and could lead directly to potentially effective therapies for NF1 patients. Dr. Le is Chair of the CTF Research Advisory Board.

Eric Legius, MD, PhD
University of Leuven, Belgium

Dr. Legius is a paediatrician-clinical geneticist and a professor of Human Genetics at the University of Leuven, Belgium. He was head of the Human Genetics Department of the University of Leuven from 2001 to 2005 and from 2010 to 2016. He is the head of the Clinical Department for Human Genetics of the University Hospital of Leuven since 2011.  Dr Legius started the Leuven NF1 clinic for children in 1989 at the University Hospital in Leuven. He is the director of the multidisciplinary care programme for children and adults with NF1, NF2 and schwannomatosis. His research is targeted towards neurofibromatosis type 1 and related conditions. In 2007 his research team identified a new condition resembling neurofibromatosis type 1 known as Legius syndrome (autosomal dominant condition caused by a heterozygous mutation in SPRED1). His research group is using mouse models to gain insight in the importance of SPRED1 and the RAS-MAPK pathway for cognition.

His research contributed successfully towards the understanding of the molecular aetiology of several types of NF1-associated tumours including GIST, glomus tumours of the digits, atypical neurofibromas and malignant peripheral nerve sheath tumours. His research group was also involved in the molecular characterization of the NF1 microdeletion region and successfully identified the SUZ12 gene as the gene responsible for the increased risk of malignant peripheral nerve sheath tumours in individuals with an NF1 microdeletion. His team was involved in a clinical trial to improve cognitive aspects in children with NF1 using Simvastatin treatment (NF1-SIMCODA trial of Erasmus University Rotterdam) and in behavioural research in NF1 children including autism spectrum disorder.

Dr. Legius is a member of the European Reference Network (ERN) GENTURIS, and participates in the thematic group on neurofibromatosis. He is a member of the steering committee that revised the diagnostic criteria for NF1 and established criteria for Legius syndrome. Dr Legius is a member of EU-PEARL, an innovative medicines initiative from the EU (IMI2) focusing on the organization of innovative clinical platform trials for NF1, NF2 and schwannomatosis.

Andrea McClatchey, PhD
Massachusetts General Hospital

Andrea “Andi” McClatchey is the Poitras Family Professor of Oncology at Massachusetts General Hospital and Harvard Medical School, and was named the 2011 Scott and Patricia Eston MGH ECOR Research Scholar in 2011. Dr. McClatchey received her PhD in Genetics from Harvard Medical School and completed postdoctoral training in the laboratory of Tyler Jacks at the Massachusetts Institute of Technology before joining the faculty at MGH and Harvard Medical School. In addition to running a research program, Dr. McClatchey is co-leader of the Landry Cancer Biology Consortium for graduate students at Harvard Medical School and devotes considerable time to the training and mentoring of graduate students. Dr. McClatchey’s research is dedicated to understanding the molecular basis of the familial tumor syndrome neurofibromatosis type 2 (NF2) and using that insight to develop and test new treatments for NF2. Her work has uncovered key aspects of how the NF2 protein Merlin functions and revealed fundamental rules by which all cells organize their outer membrane so as to appropriately interface with their environment. She actively engages in translating these fundamental scientific discoveries toward new therapeutic strategies for NF2 patients.

His research contributed successfully towards the understanding of the molecular aetiology of several types of NF1-associated tumours including GIST, glomus tumours of the digits, atypical neurofibromas and malignant peripheral nerve sheath tumours. His research group was also involved in the molecular characterization of the NF1 microdeletion region and successfully identified the SUZ12 gene as the gene responsible for the increased risk of malignant peripheral nerve sheath tumours in individuals with an NF1 microdeletion. His team was involved in a clinical trial to improve cognitive aspects in children with NF1 using Simvastatin treatment (NF1-SIMCODA trial of Erasmus University Rotterdam) and in behavioural research in NF1 children including autism spectrum disorder.

Dr. Legius is a member of the European Reference Network (ERN) GENTURIS, and participates in the thematic group on neurofibromatosis. He is a member of the steering committee that revised the diagnostic criteria for NF1 and established criteria for Legius syndrome. Dr Legius is a member of EU-PEARL, an innovative medicines initiative from the EU (IMI2) focusing on the organization of innovative clinical platform trials for NF1, NF2 and schwannomatosis.

David T. Miller, MD, PhD
Boston Children’s Hospital, Scientific Director of the Neurofibromatosis Research Initiative (NFRI)

Dr. Miller is an Associate Professor of Pediatrics at Harvard Medical School and Director of the Multidisciplinary Neurofibromatosis (NF) Clinic and the Neurofibromatosis Research Initiative (NFRI) at Boston Children’s Hospital. Through the NFRI, he created the global Genomics of MPNST (GeM) Consortium, an effort to characterize the genomic architecture of this rare NF1-related tumor to facilitate effective precision medicine.

He has led or served on several national committees and advisory boards focused on best practices for clinical genetics and genetic testing, including: Chair of ACMG’s Professional Practice and Guidelines Committee (where he led the 2019 update of “Health Supervision for Children with Neurofibromatosis Type 1,” a joint guideline of the AAP and ACMG); Co-Chair of ACMG’s Secondary Findings Maintenance Working Group; Member of ACMG’s Evidence-Based Medicine Working Group; and Deputy Editor of ACMG’s flagship journal, Genetics in Medicine.

He received his M.D. and Ph.D. from Washington University School of Medicine in St. Louis, completed a residency in Pediatrics at Yale-New Haven Hospital, and residency/fellowship in medical genetics and clinical molecular genetics at Harvard Medical School. He is board-certified in Clinical Genetics and Clinical Molecular Genetics.

Helen Morrison, PhD
Boston Children’s Hospital, Scientific Director of the Neurofibromatosis Research Initiative (NFRI)

Helen Morrison studied in the United Kingdom and received her PhD degree in Germany. After research stays in the USA and Germany, she moved to Jena to pursue her scientific career as a group leader at the Leibniz Research on Aging (FLI) where she was tenured in 2015 and was appointed Professor Neurobiology of Aging at Faculty of Biological Sciences, Friedrich Schiller University, Jena in 2020. Dr. Morrison is on national and international review panels, is an elected German Research Foundation study section member, and has initiated mentoring measures targeting young scientists and clinicians. She has also been a spokesperson for the Leibniz-funded postdoc network ‘RegenerAging’ since 2015 and a spokesperson for the interdisciplinary Leibniz Research Alliance ‘Healthy Aging’ since 2017. Dr. Morrison’s research interest lies in the nature of cell communication and the mis-wiring of signaling pathways in disease and ageing. Her research group is specifically interested in delineating the molecular mechanisms underlying neurodegeneration and in disease mechanisms for disorders of myelinating cells. These disease areas represent a great medical need and Dr. Morrison collaborates nationally and internationally with the aim to perform translational work in each area. Dr. Morrison has worked and collaborated on NF2 research for more than 15 years, focusing her efforts on dissecting merlin’s mechanism of action.

Scott Plotkin, MD, PhD
Massachusetts General Hospital
Edu Serra, PhD
Germans Trias i Pujol Research Institute
Georg C Terstappen, PhD
Executive Vice President, Drug Discovery, Cambrian Biopharma
David Viskochil, MD, PhD
University of Utah
Brigitte Widemann, MD
National Cancer Institute
Rob Brainin

Rob Brainin is a Senior Life Sciences/Healthcare Executive based in Boston, MA. He currently serves as the EVP, Chief Business Officer at Veracyte, a genomic diagnostics company whose tests provide answers that improve care throughout the patient journey. He recently served as Chief Executive Officer at Genuity Science (f/k/a WuXi NextCode), a company focused on integrating clinical and molecular data to derive insights that accelerate drug discovery and development, and ultimately improve healthcare. Prior to that, he served as the Vice President and General Manager of the Life Sciences and Applied Genomics Business at Illumina, a leading global genomics company, and before that as a 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 that served customers in the academic and BioPharma segments.

Earlier in his career, he was a management consultant at McKinsey & Co. and has served as an adjunct professor at the University of San Diego School of Law.  He is currently on the Board of Directors of Champions Oncology, a company that is transforming oncology drug development through innovative pharmacology, biomarker, and data platforms.  He received his Bachelor of Arts degree in Economics, with honors, from Emory University and received his Juris Doctor degree, cum laude, from Harvard Law School.

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.

Tracy Galloway
Chair Emeritus
Mooresville, NC

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.

Gabriel Groisman
Chairman | Bal Harbour, FL

Gabriel Groisman is a husband and a father of five beautiful girls. He spends his days working as a government affairs consultant and attorney at LSN Partners, LLC in Miami, Florida, where he is a Partner and Chair of the Israel Tech Practice. Mr. Groisman also served his community as Mayor of Bal Harbour, Florida for six years (Nov. 2016 – Nov. 2022).

In addition to his role at CTF, Mr. Groisman is also a sought-after public speaker and TV and radio analyst, on the topics of combatting anti-Semitism and Middle East policy. He is a member of the Jewish National Fund’s Speakers Bureau as well as the StandwithUs Speakers Bureau. In 2018, Mr. Groisman was awarded the Pursuit of Justice Award by the prestigious American Association of Jewish Lawyers and Jurists.He has presented as a legal scholar on two occasions at the United Nations in New York and at conferences held at the Italian Parliament in Rome, the Israeli Knesset, and conferences across the country. In addition, he often advises on cases around the world related to protecting the Jewish community from discriminatory conduct by governments and private individuals alike. Mr. Groisman was awarded the Pursuit of Justice Award by the prestigious American Association of Jewish Lawyers and Jurists.

Mr. Groisman has a B.A. in Philosophy from the University of Michigan, Ann Arbor, and a J.D. from American University-Washington College of Law.

Tracy Galloway
Chair Emeritus
Mooresville, NC

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.

Richard Soll
Edward M. Stern, ESQ
Annette Bakker, PhD
President
New York, NY
212-344-7029

Annette Bakker, the Children’s Tumor Foundation’s President, 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.

Marco Nievo, PhD
Chief Scientific Officer, CTF Europe