Who We Are

VHL Alliance Team

Janet Thompson

Executive Director

Janet joined the VHL Alliance in March of 2023. She brings 26 years of operational leadership experience through her service in the defense, federal government, and nonprofit sectors. After retiring from the U.S. Navy Supply Corps in 2015, she completed a tour with the Small Business Administration Office of Disaster Assistance before joining Good360, the leading nonprofit in product philanthropy. As part of the leadership team, Janet supported the donation of billions of dollars worth of goods from top retailers to thousands of nonprofit organizations across the country. She holds a Bachelors in Sociology from Tulane University, a Strategic Professional Certification from the U.S. Navy War College, and Nonprofit Executive Management Certification from Georgetown University.

 

Janet lives in Northern Virginia in a bustling intergenerational family home with her husband, three children, two parents, and two dogs. She is passionate about inclusion and the power of opening doors of opportunity for disadvantaged populations. Janet does not have VHL. However, her experience as a mother of a son with Down Syndrome has underscored the importance of patient communities and their profound impact for families with a challenging diagnosis. 

Thompson_Headshot 1 B&W

Joshua Mann, MPH

Director of Health

Josh joined the VHL Alliance in May of 2017. In his role as the Director of Health, Josh provides patient/caregiver support, works with VHL researchers and medical professionals, and serves as the Principal Investigator for the MyVHL: Patient Natural History Study. Joshua earned his Masters of Public Health degree in Health Care Policy and Management from New York Medical College and his Bachelors of Science degree in Business Administration and Health Care Policy and Management from Carnegie Mellon University, as well as a Graduate Certificate in Financial Management of Nonprofits from Cornell University. He has devoted his career to improving the patient experience through a variety of endeavors including entrepreneurial pursuits, nonprofit work, and collaborating with leaders in the field.

Michelle Dicken

Director of Development

Michelle Dicken comes to the VHLA with over 20 years of experience in nonprofit management. In her most recent role, she was the Executive Director for the National Kidney Foundation serving East and Middle Tennessee for 12 years. Michelle has a Master’s Degree in Nonprofit Management from Louisiana State University with a focus in Development.

 

In her free time Michelle loves to travel and spend time with her husband, Tom, two daughters, Aurelia and Joni, and her dachshund, Hank.

Anders Bjella

Director of Marketing & Communications

Anders joined the VHL Alliance in October 2022 following five years of experience as a marketing consultant for nonprofit organizations.

Professionally, Anders focuses on process development and audience segmentation to help organizations achieve their communications goals. In addition, Anders brings digital marketing & pay per click experience to the VHL team.

A lifelong lacrosse player and international travel enthusiast, Anders has spent time exploring, working, and competing throughout South America, Europe, and Asia. He is a firm believer in the power of travel to connect, inspire, and catalyze systemic change.

Paula Hernandez

Community Engagement Specialist

Paula has maintained a connection with the non-profit sector, in one way or another, throughout her life. As a Marine Corps spouse, she volunteered within both the military and civilian communities, in each locale the military planted her family. She credits her mother as her mental model in her call to serve her community and is proud to continue the legacy she forged within her daughter. Paula has taken active roles volunteering with programs within the Marine Corps, the Travis Manion Foundation, and throughout her children’s schools overseas, in Virginia, Pennsylvania, California, Arizona, and Texas. Fluent in Spanish, she is excited at the prospect of expanding the VHL Alliance reach into underserved communities. Paula joined the team in January of 2024.

 

Paula holds degrees from the University of Maryland in the Humanities and Spanish. She holds a Certificate in Non-Profit Management from the University of Texas, Austin. She and her husband reside in Virginia and enjoy concertgoing, vintage and antique shopping, and traveling – they love a good road trip. They have two adult children who live on opposite coasts of the US, giving them ample opportunities to hit the road.

Board of Directors

William Engel

Chair of the Board, Atlanta, GA

William Engel is a Managing Director with Accenture LLP with over 20 years of experience at the intersection of business strategy and technology innovation. William is currently leading the sales and growth function within Accenture’s South Market Unit, focused specifically on communications, media and high-tech clients, where he leverages his expertise in taking complex topics and making them simple. Aside from his executive responsibilities, William focuses on growing sponsorship within Hispanic American and Native American employee resource groups, while also being an active mentor to team members in the growing apprentice program.

Prior to joining Accenture, William worked with other Fortune 500 clients developing and implementing large scale technology and business transformation initiatives. These prior experiences helped him to develop an approach to transformation that focuses on the people, who are the heart of every initiative, and how to coalesce them around a passion for change.

William and his family learned about VHL when their 14-year-old daughter was diagnosed as first in family during the fall of 2019. He attributes the success and well-being his family has developed in living with VHL to the alliance and the fantastic support network they provide to all member-families.

William holds a graduate degree in Cyber Security from New York University, an MBA, and a Bachelor of Computer Science from University of Phoenix.

Kwame Garrett-Price

Vice Chair of the Board, DALLAS, TX

Kwame Garrett-Price is the Founder of Cal & Kay. The luxury brand focuses on creating timeless pieces and experiences, connecting its Texas and California origins with French savoir-faire. Prior to Cal & Kay, Kwame was employed by the hospitality company Airbnb.

Diagnosed with VHL at 32 in 2019, he is the only member of his family with the condition. Kwame is a firm believer in the power of wellness, how it promotes longevity, and how it can enhance patients’ quality of life while managing VHL. He believes in the Alliance and its burgeoning presence as a booming voice for patients everywhere.

Kwame attended Oklahoma State University, where he studied Political Science. He loves supporting the arts, spending time with his niece and nephew, and enjoying international sporting events.

Jacqueline Zarro, PhD

Board secretary, Philadelphia, PA

As a volunteer patient, Dr. Zarro had been an active member of the VHL Alliance community before joining the Board in 2023. In her advocacy work to date, Jacqueline has been committed to pursuing federal research funding and served as co-chair of the inaugural VHLA Federal Advocacy Committee. She is also a representative of the VHL community on research protocols and to other organizations and groups who champion kidney cancer research, neuroendocrine research, urologic cancers, the Congressionally Directed Medical Research Program, and rare diseases overall. Further, through her advocacy work, she is committed to raising the awareness of diversity and inclusion and calling to attention the significant disparities in healthcare and survival outcomes.

 

With her past professional career in healthcare as well as in the industry side of the clinical research arena, Jacqueline brings to the table a multi-disciplinary approach with a focus on actionable, attainable, and impactful goals to promote collaboration across aligned advocacy stakeholders.

 

Diagnosed at the age of 44, she has many VHL manifestations and has undergone a variety of extensive treatments just like so many others. She believes that every member of the VHL community has an extraordinary power to advocate and encourages individuals to do what they are able. This belief is rooted in the fact that discoveries over decades of research of VHL gene have recently proven extraordinarily fruitful and that this knowledge will continue to benefit our VHL community along with many other medical conditions, as well.

 

Living in Philadelphia with her husband and rescue cat named Grace, Jacqueline prioritizes time with family who are close by.

Seth Horwitz

Board Treasurer, New York, NY

Born and Raised in the New York area, Seth is a consultant specializing in the area of Tax-Exempt Municipal Finance. Previously, Seth worked for Morgan Stanley for twelve years in several practice groups. Seth received a Bachelor of Science in Economics from the Wharton School at the University of Pennsylvania, with a dual concentration in Finance and Information Systems. Seth is an avid New York Islanders and Formula 1 fan, whose hobbies include coding software for fun and driving anything with an engine.


Diagnosed, at the age of thirteen, with a de novo mutation of the VHL gene in 1991, Seth is the only member of his family with the disease. After moving to New York City, many years after initial diagnosis, and several previous surgeries, with the assistance of the VHLA Seth sought out specialists in the condition. This has resulted in a more comprehensive approach to treatment, at another level, which would not have been possible without the Alliance. Until the 2014 New York VHL Alliance Gala, Seth had never met anyone else with VHL. As a new member to the Board, Seth seeks to offer any assistance possible to other patients, and help achieve the goal of a cure.

Lee Willer-Spector, MPA

Marco Island, FL

Lee Willer-Spector is a Management Analyst in the Communications, Government and Public Affairs division of Collier County government.

 

Lee earned a Bachelor of Arts degree, cum laud, in psychology from the University of Colorado, Boulder and her Master of Public Administration from Florida Gulf Coast University. She was the President of the Marco Island, FL Chamber of Commerce and served as the publicity chair for the League of Women Voters in Boulder County. She continually finds herself involved with conscientious and thoughtful people working to improve the lives of people in her community.

 

Lee raised four children including Nancy Rose who was diagnosed with VHL in 2017 at the age of 29. “Soon after Nancy Rose was diagnosed with VHL we reached out to the VHLA and could not have been more warmly welcomed into the VHLA family at the annual Family Conference in Tampa in 2017. The VHLA provided not only the lifesaving information we needed to begin to understand how to manage my daughter’s care, but they embraced us with community. I was and am so impressed with the formation of the critically important Clinical Care Centers across the United States and to have connected with Nancy Rose’s outstanding VHL team at the Moffitt Center in Tampa. The young adult get-togethers and the annual family conferences, the Facebook group, and the educational interviews with leading researchers in the field have been outstanding resources in advancing the support for both the patients and their families. I am indebted to the VHL Alliance.”

John Josey, PhD

Dallas, TX

Dr. Josey joined The Column Group as a Venture Partner in 2020. Previously he served as the President, Chief Executive Officer and a member of the Board of Directors of Peloton Therapeutics, Inc., from 2013 until its acquisition by Merck in 2019. He joined Peloton in 2011 as the first employee in the role of President and Chief Scientific Officer. For over thirteen years, Dr. Josey was employed at Array BioPharma Inc., a company that he helped to build as a member of the founding management team. There he rose to Vice President of Discovery Chemistry. Dr. Josey’s previous experience also includes Amgen, Inc. and the Glaxo Research Institute. He received a BS degree in chemistry from Colorado State University, a PhD in organic chemistry from The University of Texas at Austin, and an MBA from the University of Colorado. He was a Damon Runyon-Walter Winchell Postdoctoral Fellow at the California Institute of Technology. Dr. Josey is currently an adjunct faculty member of the Department of Biochemistry at The University of Texas Southwestern Medical Center and serves as Chair of the Board of Directors at Circle Pharma, Inc.

Prashant Kudva

Cambridge, MA

Prashant Kudva has more than 18 years of experience in finance, mergers & acquisitions, capital raising and valuation with a focus on biotech. Prashant currently works at Emendo Biotherapeutics where he leads M&A, licensing and collaboration transactions in various therapeutic areas. Prior to Emendo, Prashant led business development/M&A at several other biopharma companies. Before this, Prashant was an investment banker in the healthcare space focusing on mergers and acquisitions advisory and capital raising with various investment banks and advisory firms including Kaufman Hall, Stifel, Lazard and Merrill Lynch. Prashant advised numerous public and private companies of various sizes on a variety of transactions including acquisitions, sales, divestitures, initial public offerings (IPOs), follow-on offerings and private capital raises.

Having worked with a number of biotech, and more specifically oncology companies, Prashant believes the VHL gene might be broadly relevant in other cancers, and studying and curing VHL may be key to understanding and curing other cancers.

Prashant holds a B.A. in Economics and Political Science from the University of Chicago and a Masters in Biotech Enterprise and Entrepreneurship from the Johns Hopkins University.

Ruhee Dere, PhD

Houston, TX

Bio coming soon!

Cary Schwanitz

Lehi, UT

Cary has worked in television newsrooms for more than 30 years. Most of his career has been spent working on the assignment desk where he is responsible for gathering, organizing, and presenting the day’s news and events for newscasts. Cary has interviewed several local and national newsmakers taking advantage of his lengthy list of contacts. He has numerous awards for his work producing newscasts and coordinating breaking news.

Cary was first diagnosed with VHL in 1993 with a hemangioblastoma on his brain stem and renal cell carcinoma. His three children also have VHL. Cary and his wife Gail left their longtime Albuquerque home in 2019 to be near the University of Utah VHL Clinical Care Center. Cary first worked with the VHL (Family) Alliance in 1997 when Joyce Graff asked him to complete the initial VHL video for patients.

Cary has judged several state pageants for the Miss America Organization. He loves auto-racing, particularly Formula 1. You can find Cary on most weekends enjoying any combination of BBQ, bourbon, beer, and loud rock-and-roll in his backyard.

Rohan Nirody

SAN FRANCISCO, CA

Rohan Nirody is a senior member of the private equity team at Viking Global Investors, L.P., where he currently helps lead the firm’s private healthcare investing practice. From 2009 to 2016, Mr. Nirody was an Investment Analyst on Viking’s public equity investment team, responsible for identifying, researching and making public equity investments in the healthcare sector. Previously, Mr. Nirody was an Associate at Elevation Partners, a media-focused private equity firm, and he began his career as a Private Equity Analyst at the Blackstone Group. Mr. Nirody earned an MBA from Harvard Business School and a BS in Economics and BA in International Studies, summa cum laude, from the University of Pennsylvania.

 

Rohan is grateful for all the support the Alliance has provided to his family members who have VHL, and he looks forward to working with the organization to improve the lives of patients and advance research efforts.

 

Stacy Camille Yates, MEd

Philadelphia, PA

Stacy Camille Yates, M. Ed is originally from Queens, NYC. Stacy was diagnosed with VHL at the age of 12. VHL has impacted Stacy’s life tremendously ultimately being the cause of death for multiple family members including her mother and brother but nevertheless, she persisted.

Stacy is a Certified School Counselor in Philadelphia where she is able to impact the lives of high school youth on a daily basis. Stacy is also a 3x self-published author of inspirational, motivational journals which were born out of a need Stacy sought while dealing and healing from VHL.

Stacy currently resides in a suburb of Philadelphia with her husband, Malcolm and their daughter, Camille. Stacy’s motto in life is “Maintaining No Sense Complaining!”

Othon Iliopoulos, MD, PhD

Boston, MA

Dr. Othon Iliopoulos is an oncologist at Massachusetts General Hospital, where he serves as the Clinical Director of the VHL Disease/Familial Renal Cell Cancer Program. He is also an Associate Professor of Medicine at Harvard Medical School and at the Center for Cancer Research at MGH. Dr. Iliopoulos is a VHL Alliance Research Grant Recipient and is a Clinical Investigator for the MK-6482 (formerly PT-2977) clinical trial. His lab is involved in research pertaining to the main mechanisms underlying the reprogramming of cancer cell metabolism and cancer angiogenesis with the goal to develop mechanism-based strategies for selectively killing cancer cells. Dr. Iliopoulos is the Chair of the Clinical Advisory Council and the Research Council.

Danny Batten

Lexington, KY

Danny is originally from College Park, Maryland and currently resides in Lexington, Kentucky. He is a graduate student working toward his PhD in Hispanic Studies at the University of Kentucky and specializes in phonetics, bilingualism, and second language acquisition. He also serves as the Executive Assistant for the Kentucky Foreign Language Conference. Prior to that, Danny taught high school Spanish for ten years in Georgia and Connecticut. He is a graduate of the University of Richmond and Middlebury College.


Danny was first diagnosed with VHL at age 18 following the discovery of a brain tumor. As a de novo or first in family case, it came as quite a surprise, but his family was fortunate to find the VHLA’s resources early on. He believes strongly in the value of the community that the VHLA has built for patients and their loved ones, and he hopes to continue the organization’s excellent work supporting young and first-in-family patients. He credits the Young Adult Retreat in 2018 as an inspiring moment that led him to get more involved with the VHLA.


In his free time, he enjoys activities that keep him mentally and physically active, like cooking, reading, playing golf, and riding horses with his partner.

Daffodil Baez

Washington DC

Daffodil received her Bachelor’s degree at Rice University before pursuing her Master’s in Public Health at Columbia University. She began her career as a financial analyst for a commercial health insurance payer before transitioning to practice management. After completing her Master’s in Business Administration at Arizona State University, she moved into an executive role for an integrated healthcare provider in Phoenix, AZ which focused on combining medical primary care with behavioral healthcare to the underserved community. In 2020, Ms. Baez was inducted as a Fellow of the American College of Healthcare Executives.

Since high school, Ms. Baez has volunteered in the community as an educator, organized free health fairs, and is a contributing author to a healthy lifestyle book and curriculum. She helped launch the National Association of Latino Healthcare Executives (NALHE) Dallas Fort Worth chapter. Daffodil is a board member of Head Start of Greater Dallas, the Greater Dallas Hispanic Chamber of Commerce, and the Maricopa Village Christian School on the Gila River Pima Reservation. She is also an active member of the National Association of Health Service Executives (NAHSE) and the American College of Healthcare Executives (ACHE). In her spare time she enjoys cycling, traveling, and baking. She is a native Texan, the first generation born in the US. Her family emigrated from the beautiful Dominican Republic.

Clinical Advisory Council

Adrenal

Tobi Else, MD, Associate Professor, Division of Metabolism, Endocrinology and Diabetes, University of Michigan, Ann Arbor, MI

Graeme Eisenhofer, MD, Departments of Clinical Chemistry and Laboratory Medicine, University of Dresden, Uniklinikum Dresden, Germany

Richard Hodin, MD, Chief, Endocrine Surgery, Massachusetts General Hospital, Boston, MA

Jacques Lenders, MD, PhD, Professor in Internal Medicine and Deputy Chair of the Department of Medicine, Radboud University Nijmegen Medical Center The Netherlands

Nancy Perrier, MD, Professor, Department of Surgical OncologyMD Anderson Cancer Center, Houston, TX

Steven Waguespack, MD, Professor of Internal Medicine and Pediatrics, MD Anderson Cancer Center, Houston, TX

CNS/ELST

Ashok Asthagiri, MD, Associate Professor of Neurosurgery, University of Virginia, Charlottesville, VA

Paul Gidley, MD, Department of Head and Neck Surgery, Division of Surgery, M.D. Anderson Cancer Center, Houston, TX

Sven Gläsker, MD, Department of Neurosurgery,Universitair Ziekenhuis, Brussels, Belgium

Rimas V. Lukas, MD, Associate Professor of Neurology, Northwestern Medicine, Chicago, IL

Russell Lonser, MD, Neurosurgeon, Ohio State University, Columbus, OH

Ian McCutcheon, MD, FRCSC, Professor, Department of Neurosurgery, Division of Surgery, The University of Texas M.D. Anderson Cancer Center, Houston, TX

Brian Nahad, MD, Associate Director MGH Neurosurgery Program, Massachusetts General Hospital, Boston, MA

Genetics

Wendy Chung, MD, Clinical Genetics, Associate Professor of Pediatrics (in Medicine), Columbia University, New York, NY

Charis Eng, MD, Hardis/ACS Professor of Cancer Genomic Medicine and Chairwoman, Genomic Medicine Institute; and Director, Center for Personalized Genetic Healthcare at the Cleveland Clinic, Cleveland, OH

Eamonn Maher, MD, FRCP, Professor of Medical Genetics and Genomic Medicine, University of Cambridge, Cambridge, England

Katherine Nathonson, MD, Pearl Basser Professor for BRCA-Related Research, Abramson Cancer Center of the University of Pennsylvania, Philadelphia, PA

Stéphane Richard, MD, PhD, Professor of Oncogenetics and Chair, National Expert Centre for Rare Cancers PREDIR, Le Kremlin-Bicêtre, France

Kidney

Jad Chahoud, MD, MPH, Moffitt Cancer Center, Tampa, FL

Gennady Bratslavsky, MD, Professor and Chair of Urology, Upstate Medical University, Syracuse, NY

Jean-Michel Corréas, MD, Professor of Radiology at the Paris-Descartes University, Centre Hospitalier Necker, France

Surena Matin, MD, Professor, Department of Urology, Division of Surgery, MD Anderson Cancer Center, Houston, TX

Brian Shuch, MD, Director of Kidney Cancer Program and Assistant Professor of Urology, University of California, LA, Los Angeles, CA

Phillippe Spiess, MD, Professor of Oncology and Urology .  University of South Florida Morsani College of Medicine, Moffitt Cancer Center, Tampa, FL

Ramaprasad Srinivasan, MD, PhD, Investigator. Urologic Oncology Branch, National Cancer Institute, National Institutes of Health Bethesda, MD

Oncology

Thai Ho, MD, Medical Oncology, Mayo Clinic, Scottsdale, AZ

Othon Iliopoulos, MD, PhDChair, Clinical Director, Von-Hippel Lindau Disease/Familial Renal Cell Cancer Program, Associate Professor of Medicine, Center for Cancer Research, Massachusetts General Hospital, Boston, MA

Eric Jonasch, MD, Professor, Department of Genitourinary Medical Oncology, Division of Cancer Medicine, The University of Texas M.D. Anderson Cancer Center, Houston, TX

Sandy Liu, MD, University of California, LA, Los Angeles, CA

Vivek Narayan, MD,MS, Assistant Professor of Medicine, Division of Hematology Oncology, Universtity of Pennsylvania, Philadelphia, PA

Pancreas

Steven K. Libutti, MD, Director, Rutgers Cancer Institute of New Jersey. Director and Vice Chancellor for Cancer Programs, Rutgers Biomedical and Health Sciences, New Brunswick, NJ

Pascal Hammel, MD, Department of Gastroenterology & Pancreatology, Hôpital Beaujon, France

Electron Kebebew, MD,  Professor and Chief Department: Surgery – General Surgery, Stanford Cancer Center, Stanford,  CA

Amit Tirosh, MD, Head of Neuroendocrine Tumors Service, The Endocrine Institute & Endocrine Oncology Bioinformatics Lab, The Endocrinology and Diabetes Research Center, Sheba Hospital, Tel HaShomer, Israel

Rachel van Leeuwaarde, MD, University Medical Center, Utrecht, Netherlands

Research Council

Othon Iliopoulos, MD, PhD, Chair, Clinical Director, Von-Hippel Lindau Disease/Familial Renal Cell Cancer Program, Associate Professor of Medicine, Center for Cancer Research, Massachusetts General Hospital, Boston, MA

Wendy Chung, MD, PhD, Associate Professor of Pediatrics (in Medicine), Columbia University, New York, NY

Maria Czyzyk-Krzeska, MD, PhD, Professor, Department of Cancer Biology, University of Cincinnati, Vontz Center, Cincinnati, OH

Ruhee Dere, PhD, Assistant Professor, Baylor Medical Center, Houston,   TX

Ian Frew, PhD, Professor for Oncogenic Signalling, BIOSS Centre for Biological Signalling Studies, Albert-Ludwigs-Universität Freiburg, Germany

Betty Gardie, PhD, Associate Professor, Institut National de La Sante et de la Recherche Medicale, Paris, France

Tien Hsu, PhD, Professor of Medicine, Boston University School of Medicine, Boston, MA

Jacques Izard, PhD, Associate Professor, Food Science and Technology, University of Nebraska, Lincoln, NE

Eric Jonasch, MD, Professor, Department of Genitourinary Medical Oncology, Division of Cancer Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX

Mei Koh, PhD, Assistant Professor of Pharmacology and Toxicology, University of Utah, Salt Lake City, UT

Xin Lu, PhD, John M. and Mary Jo Boler Assistant Professor, NotreDame University, NotreDame, IN

Anna Matynia, PhD, Associate Researcher Ophthalmology Jules Stein Eye Institute, Los Angeles, CA

Eamonn R. Maher, MD, FRCP, Professor of Medical Genetics and Genomic Medicine, University of Cambridge, Cambridge, England

Alexander Vortmeyer, MD, PhD, Clinical Professor of Pathology, Indiana University Health Pathology Laboratory, Indianapolis, IN

Haifeng Yang, PhD, Assistant Professor, Thomas Jefferson University, Philadelphia, PA