Manuel Greco is a physicist, works as a quantitative researcher at Morgan Stanley, and enjoys his spare time as a music producer. Originally from Rome, Italy, he now lives in Brooklyn, NY with his wife where he enjoys a great life and spells of good health.
Manuel had his first VHL-related surgery in 1990. Since then, he has had several surgeries—in the cerebellum, kidneys and spine. Once diagnosed, thanks to his family support and search for knowledge, he managed to reach out to the best VHL experts and doctors. By joining the VHLA Board of Directors, Manuel looks to forward his quest to know more about the VHL genetic disorder and help find a permanent cure for it.
Doug Karle has been in the hospitality industry since 1995 and is a Partner and Vice President of Operations for LHR Hospitality based in Saint Paul, MN. He studied Geography at the University of Minnesota and is a huge Golden Gophers fan. Doug is currently serving on the Board of Directors for the Minnesota Lodging Association and volunteers for The Turnipseed Project which works with current inmates on personal transformation inside Minnesota prisons. He cofounded the music festival Rockwood’s Jamfest, is the Former Commander of Veterans of Foreign Wars Post 1782 and has served on both municipal and state commissions and committees.
Doug had bilateral pheochromocytoma and a bilateral adrenalectomy in 2014 as a result of VHL. He is in a watchful waiting period on two hemangioblastomas and one paraganglioma. He was diagnosed in October 2015 and was at his first VHL Annual Family Meeting two weeks later. Doug has been actively involved in educating himself and bringing people together since his diagnosis. He is passionate about connecting patients and caregivers with each other, fundraising and helping to find a cure for VHL.
Andrea Rafael, a mathematician by training, has been working as Director of Investment Analytics & Risk Management at the Yeshiva University Investment Office since January 2010. Prior to joining the Yeshiva Endowment, she served 3 years as a Senior Quantitative Analyst at ING Investment Management’s Fund of Funds Group where she developed risk analytics and risk management process for the FoHF, performed quantitative hedge fund analysis, and designed and implemented risk analytics and portfolio management tools. Earlier she was a consultant at Morgan Stanley (Equity Prop Group, and Quantitative and Derivative Strategies Group).
Andrea has a BS with Honors and an MA in Mathematics from Indiana University Bloomington, and recently completed her MS in mathematics with concentration in math finance at the Courant Institute of Mathematical Sciences at New York University, where her thesis won a best MS Math Thesis award.
Andrea is a runner who has completed several marathons and half-marathons and has successfully raised funds for charitable causes.
Andrea’s family has a history of VHL – her uncle who passed away when she was 12 had VHL, although the VHL diagnosis was confirmed much later. She also has two cousins with VHL who have had multiple VHL-related surgeries (kidney, brain, eye). As a member of the VHL Board of Directors, Andrea is looking forward to helping with research to find a cure for VHL.
Anna Waller received her MBA in 2006, while working in sales for more than 30 years. For 12 of those years, she owned an Internet company that originated the soccer ball car magnet and sold car magnets across the country. Currently, Anna has taken a new career path as the Director of Children’s Ministry at a local church.
Anna enjoys being involved with the VHL monthly telephone support calls and attending the Annual Family Weekends. She believes that through the efforts of the VHL Alliance, the day is coming when von Hippel-Lindau will be a commonly recognized genetic syndrome.
Anna is an avid reader and dabbles in creative writing. She lives in Northeast Georgia with her husband, John. Together, they have three grown children and two grandchildren. Her daughter, the youngest of the three, was diagnosed with von Hippel-Lindau in 2008 at the age of 17 and is the first in the family with VHL.
Steven Angotti is a native of Tampa Bay. After attending high school in the region, he earned his Bachelor’s Degree in Environmental Science and Policy from the University of South Florida in Tampa, and earned his law degree from the University of Miami.
Steven discovered he had von Hippel-Lindau at age 16 and, since then, has had four brain surgeries. In the time after being diagnosed with VHL, Steven has played soccer in Brazil, became an attorney, worked with a member of the US House of Representatives, participated as a fellow with the New Leaders Council, and was named the 2016 30-Under-30 for politics in the state of Florida.
Steven is passionate about the environment and energy law, as well as education and policy-making, and he hopes to use his experience and knowledge to help his community, including others with VHL.
Emily is a licensed social worker with experience in the mental health field. Emily earned her MSW in 2008. She has worked with multiple populations including young adults with severe and pervasive mental illness, individuals with Borderline Personality Disorder, and persons with Substance Use Disorders. Currently, she is employed by a leading third party administer in the management of disability claims.
Emily lives in Southeast Michigan with her husband and young son. She enjoys cooking, spending time with her family, and reading with her son.
Emily inherited VHL from her late father. Her VHL diagnosis was confirmed through genetic testing at the age of 17. Emily’s father and uncle were the first in her family known to carry the mutation. Her sister and niece are also affected. Emily attended the Annual VHL Family Meeting in 2016, and was inspired to do more personally to help those impacted. She is passionate about empowering others to advocate for themselves, and become active in the medical decision-making process.
Barbara Correll has more than 15 of experience in health care marketing and communications, including work in brand building initiatives, corporate positioning, public health campaigns, public relations and product launches. She is currently the Senior Vice President of Marketing at StayWell, a provider of patient education and population health management solutions. In her position, she provides leadership for all marketing and corporate communications functions.
Prior to StayWell, Barbara was Vice President of Marketing at The Vitality Group, a provider of incentive-based health management programs. She also served in senior roles at Edelman, Fleishman-Hillard, Inc. and Cohn and Wolfe, where she provided strategic counsel and led development and implementation of marketing communications and public relations programs for several health care clients. Earlier in her career, she worked at the American Medical Association, where she managed grant-funded public health campaigns and programs. Barbara earned her Bachelor of Science in Exercise Science and Nutrition from Iowa State University. She also holds a Master of Science in Health Care Administration and Policy from DePaul University.
Gordon Cooke is a Vice President and Wealth Strategist for Northern Trust’s San Diego Region. Gordon is also a proven sales and marketing professional having worked in luxury real estate, private club markets, the premium hospitality space and as a sales executive with the American Express Corporation. Gordon is also a veteran of the armed forces and served in the U.S. Army as a Captain in the Field Artillery branch with duty assignments in Northern Greece, Ft. Sill in Lawton, OK and Ft. Lewis in Tacoma, WA. Prior to his assignment in Greece, Gordon attended the Defense Language Institute in Monterey, CA and received a certification in Modern Greek. He also received his B.A. in Economics with a minor in Government from Georgetown University and a Masters of Business Administration in Marketing and Entrepreneurial Studies from the U.C.L.A. Anderson School of Management.
Gordon is very active in the San Diego community and serves on the board of Scripps Green Hospital and Scripps Clinic. Gordon is also an active member of The Century Club of San Diego and coaches his son’s flag football team.
Gordon and his wife, Julie, reside in San Diego with their teenage children Emily and Charlie.
A New Jersey native, Jennifer spent ten years working in Latin American and the former Soviet Union as a US diplomat, specializing in public affairs. A chance encounter with her future husband diverted her to Moscow and a new career in Corporate Communications, where she helped multinationals navigate Russia’s fast-changing business environment. Ten years later, an international assignment for her husband presented her with the opportunity to leave full time employment and spend a considerable amount of time volunteering for community organizations in the UK and Russia. Jennifer is a graduate of Georgetown University and the Universidad de las Americas.
Like many, she is grateful to the VHL Alliance for explaining a genetic disorder she’d never heard of, and begin a journey she’d never wished to start, when a close family member was diagnosed. Her greatest hope is to see a cure for the disease, and in the meantime, help ensure that those in the VHL community can find the resources and support they need.
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.
Eric Jonasch, MD is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine, at the MD Anderson Cancer Center of the University of Texas in Houston. Since 2003, Dr. Jonasch has been the Director of the VHL Clinical Care Center in Houston. He is also the Chair of VHLA’s Research Council, Clinical Advisory Council, and Clinical Trials Task Force.
Dr. Jonasch obtained his MD at McGill Medical School in Montreal, Canada, and completed his clinical residency in Internal Medicine at the Royal Victory Hospital in Montral, Canada. He then completed his research and clinical fellowship in Hematology/Oncology at the New England Medical Center in Boston, MA, followed by a research fellowship at Beth Israel Deaconess Medical Center in Boston, MA.
Dr. Jonasch’s research focuses on three major themes: elucidating factors contributing to response and resistance to targeted drug therapy, discovering and characterizing novel VHL binding proteins, and developing ways to stabilize and refunctionalize mutated VHL proteins involved in von Hippel-Lindau syndrome. In addition, Dr. Jonasch has been and continues to be the principal investigator on numerous clinical trials hoping to find an effective treatment for von Hippel-Lindau syndrome.
Camron King is President of the leading caviar producer in North America. Recognized for his dynamic leadership, effective management and forward-thinking approach to brand building, Camron has been fortunate to have built a successful career in luxury value-added agriculture in both wine and caviar. His experiences are diverse ranging from marketing, public relations, management to government affairs. He is a regularly invited presenter at conferences and events around the world.
Camron attended Cal Poly, San Luis Obispo studying Environmental Horticultural Sciences, California State University, Sacramento studying Government and then graduate studies in Public Policy and Administration.
Recognizing the value of participation and leadership in different groups and organizations, Camron has previously served on the VHL Alliance Board and is excited to be again able to work for the good of the Alliance. He also serves as Chair of his children’s school Advisory Commission and has been and continues to be engaged in a number of professional and industry organizations.
Having a personal relationship with VHL, Camron looks forward to working with the dynamic volunteers and staff of the VHLA to move towards a cure and to bettering the quality of life for families and friends today.
Bettina Micheli was born and raised in Italy and moved to the US to attend Boston University for her BA. She studied Political Science and Mass Communication. In 2000, she returned briefly to Italy and then eventually moved to New York City where she lives and works. Bettina is a producer for photography and online video content.
Bettina does not have VHL, but she has a friend who does. It was through him that she learned about VHL. Helping this organization to raise awareness and funding for future research and a cure is a way of helping a friend and other people impacted by VHL. It also means contributing to advances in research and a cure for other types of cancer, including breast cancer, which has affected her mother.
Mark is an executive specializing in the field of structured insurance settlements, commodities trading and accredited investing. He has worked in the industry for over three decades and is the Managing Director of American Companies. Mark is based in Minneapolis and he serves an international clientele.
Mark has given over a decade of his time volunteering as a coach for youth sports in his community. He has experience advocating on behalf of those with VHL. Mark has a strong interest in seeing the VHL Alliance deliver the “Knock Out” punch to von Hippel- Lindau disease.
If he is not collecting classic cars, you can usually find Mark at a Major League Baseball park somewhere in the country. He and his son are on a mission to hit all the MLB parks in the nation. If he is not there, look in the Gulf of Mexico where he is likely fishing for big Grouper.
Karen Ramsey is the founder of Lead for Good, a nonprofit organization dedicated to helping individuals become great nonprofit leaders. A Credentialed Coach and Senior Professional in Human Resources, Karen has over 20 years of leadership experience. She holds a B.A. in Economics from the College of William and Mary and an M.S. in Communications from Virginia Commonwealth University. Her second book, entitledLead for Good Guide Book: 7 Steps for Unleashing the Great Nonprofit Leader Within, will be published in 2015.
As a recently diagnosed VHL patient herself, Karen has relied heavily on the information provided by the VHL Alliance. She is committed to raising awareness about the syndrome as well as supporting others who seek practical information that will help them be informed consumers of medical treatment.
For the past several years, Soniya Sapre has helped to build technology startups in the digital media and e-commerce industries. She attended the University of Pennsylvania and began her career working in finance and international development before heading to business school at Stanford. Having experienced first-hand the challenges of dealing with a complex condition such as VHL, she is passionate about using technology to connect with patients and families, and about furthering the research agenda.