Board of Directors
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Rachel Tugon |
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| Rachel was born and raised in Kentucky, the daughter of Paul and Maxine Whitler. After graduating from Campbellsville College with a degree in English and Journalism, she went to work for a newspaper in western Kentucky as a reporter and photographer. Later, Rachel taught elementary school in Davao City, Philippines. After returning to the US, she completed her studies at the Southern Baptist Theological Seminary in Louisville where she received her Master's in Divinity and Religious Education with a focus on Ministry to children and families. She then married Pete Tugon, whom she had met while working in the Philippines. For the next several years, she and Pete served in churches in Kentucky and California. Rachel later became credentialed in teaching English as a Second Language from the University of California at Santa Barbara. When she returned to Kentucky following the birth of their daughter, Kristen, Rachel taught ESL and became the Director of the ESL program at the Jewish Community Center. She later became the Assistant Director of the ESL program at the University of Louisville, responsible both for teaching and for supervising students from Kansai Gadai University in Japan. Rachel also worked as a consultant for the Department of Adult Education and Literacy of Kentucky as a teacher, Teacher/Volunteer Trainer, and Curriculum Developer. She authored an ESL teaching manual for the state of Kentucky and led workshops in ESL methodology and practice throughout the state. Following the birth of her daughter, Erin, in 1996, and the subsequent diagnosis of PWS, Rachel focused all of her energy on finding appropriate intervention and treatment for the symptoms of PWS. Part of that search became the development of Prader-Willi Friends Kentucky, a local family support group, and later the Foundation for Prader-Willi Research. She was the first President of the Board before becoming the first Executive Director, returning to the Board in 2007. Rachel enjoys writing, movies, traveling and music. | ||
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Alice Viroslav, M.D. |
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"Although my daughter Olivia is beautiful, charming and smart, her chance of living an unrestricted life is uncertain at best. Through the work of the FPWR, we have the power to change her future and free her and others like her of the burden of PWS. It is our obligation and our responsibility." Alice Barnes Viroslav was born in Houston, Texas and raised in San Angelo, Texas. She graduated from Southern Methodist University in 1985 and received her MD from Southwestern Medical School in 1989. Following medical school, she completed a residency in Diagnostic Radiology and a fellowship in Neuroradiology at Emory University School of Medicine. While at Emory, Dr. Viroslav served as Chief Resident in Radiology. Dr. Viroslav served as President of FPWR from 2005 to 2007 and currently serves as Vice-President. Prior to 2005, she was the Vice-Chair of the Scientific Board of the FPWR. In addition to her position with FPWR, Dr. Viroslav serves on the boards of multiple local and national non-profit organizations. She recently completed her term as Chair of the Board of Trustees of Saint Mary's Hall Preparatory School and is a member of the Board of Directors of the Winston School of San Antonio. She is Vice Chair of the Board of Directors of the Jewish Federation of San Antonio. She is also a member of the Board of Trustees of United Jewish Communities and was recently selected as Chair Designate of UJC's National Young Leadership Department and as an inaugural member of the Council of the Center for Jewish Philantropy. She is a member of the national board of the Jewish Council for Public Affairs and will chair the JCPA's national Plenum in 2010. Dr. Viroslav is a classically trained soprano and is a Past President of the San Antonio Mastersingers. She received her black belt in Taekwondo in 2004. Dr. Viroslav resides in San Antonio, Texas, with her husband, Sergio Viroslav, MD, and their three children, Hannah, Olivia and Evan. She is a neuroradiologist in private practice. Her daughter Olivia was diagnosed with Prader-Willi Syndrome in 2001. |
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Keegan Johnson |
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Keegan Johnson is the President and Co-Founder of Ethoca, a privately held company which acts as the center of a community of online companies working together to share order experiences and stop fraudsters dead in their tracks without blocking good orders. Prior to founding Ethoca, Keegan spent more than 8 years in the Internet integration and ASP industry, successfully leading CryptoLogic Inc.’s technical and business integration with a number of blue-chip companies. Keegan is also the founding President and Chairman of the Foundation for Prader-Willi Research Canada (www.fpwr.ca). He holds an Honors Bachelor of Science degree in Computer Science with a minor in Physics from McMaster University. At McMaster, Keegan was a captain and an OUAA All-star with the Marauders Men’s basketball team. Keegan currently lives in Mississauga, with his wife Tanya. He is a proud father to Denzel and Dante (PWS). |
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Tom Compere |
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In the words of Tom and his wife Renay, "Our most life-altering event was the birth of our son William and his diagnosis of Prader-Willi syndrome. The thing that has kept us going over the years has been the optimism that a cure for PWS will be found and that our son will have a normal life. What a concept! A normal life was something, until recently, that I took for granted."
Tom says that his involvement in the Foundation for Prader-Willi Research (FPWR) has been a godsend. "It has enabled us to channel our anxiety into action. We have witnessed the amazing power of the will of a few individuals in the metamorphosis of FPWR from a good idea to an effective operating organization." Tom is a CPA practicing in West Los Angeles and Renay is a kindergarten teacher at the local elementary school. He joined the Board of the FPWR in 2006 after he and Renay decided they wanted to take a very proactive role in their new son William's battle against this syndrome. Tom and Renay organize fundraising events and he assists in organizational planning, financial reporting, and tax compliance of the organization. |
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Jessica Howard "It was evident early on that our son Riden's unique spirit makes this world a better place. He's a happy, bright and beautiful little boy. I smile just thinking about his life's potential. Without new treatments for PWS though, the outlook is clouded by the restrictions of PWS. I can't just let PWS happen to him without a fight. We have the power within FPWR to fight hard against PWS and win!" Jessica and her husband Tom attended the FPWR golf tournament in DC in 2006 and were "blown away" at how professional and well-run the event was. Jessica said, "We felt the can-do-it energy from the other families we met and knew that this was a group we need to be a part of!'" Her experience at the first FPWR Hike the Hill event in 2008 inspired and empowered her to become more involved with the FPWR.
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Jeff Porter |
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| "I'm thrilled about being a part of a dynamic group of parents and individuals focused on creating a better life for our kids. FPWR is poised to do great things to help those with Prader-Willi syndrome, and it's a pleasure to be a part of it!" Jeff is currently the VP/GM of MobilePeople Inc. where he is responsible for the North and South American business expansion for MobilePeople A/S a Denmark-based mobile local software solutions company. Prior to this, he was the VP/GM of DexKnows.com a leading Internet Yellowpages business owned by R.H. Donnelley. At RHD, he oversaw the development, implementation and marketing of DexKnows.com. Under his direction, DexKnows.com provided millions of consumers and local businesses with a user-friendly means of connecting with one another. When Jeff is not working or traveling, he spends time at home with his family, taking photos, and trying to get in a workout or two. Jeff holds a M.B.A. from the University of Denver and a B.S. in Electrical Engineering with distinction from the University of Virginia. He lives in Denver, Colorado with his wife Kari, and their four children: Jake, Abby (PWS), Anna, and Lucy. |
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Mark Greenberg |
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| When Zachary was born in 1999, Denver residents Mark and his wife Robin Fleischmann both set about learning as much as possible about PWS. When they realized the need for more resources for research Mark was glad to able to join FPWR.
Mark, a Chartered Financial Analyst, is an advisor to several investment funds, has been a portfolio manager and investment professional for the past 30 years, including the period from 1996-2009 where he managed more than $1.5 billion for Invesco and Aim Mutual Funds. Now he is proud to be leading the FPWR Endowment Fund, which was created to allow for planned giving by family members and friends of the Prader-Willi community. Mark was graduated from Marquette University with a degree in business economics and a specialization in finance. |
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Lauren Roth, Ph.D |
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"When our daughter, Emma, was first born, my husband and I realized that there was not enough research being done in PWS. There has got to be more tha we can do. Some years later I found FPWR and it was exactly what we had in mind--a group of proactive, energetic parents who won't take no for an answer. Being involved in the FPWR has been an extremely positive and healing experience for our family. The work I do with FPWR and on the Board is one of the things I am most proud of. It has also been very important to me to say to be able to say to Emma, when she becomes old enough to understand PWS and the struggles she may face, that her mom is doing everything she can to make PWS a non-issue in her life. FPWR is the best vehicle I know for doing just that." Lauren was born in Summit, New Jersey but her family moved to Southern California shortly thereafter. She graduated from University of California, San Diego in the Honors Program in 1986 with a BA in Psychology. She worked for a year after college doing research at Childrens Hospital in San Diego, studying children with speech and learning disorders. Lauren received her Ph.D. in Clinical Psychology from the University of California, San Diego - San Diego State Joint Doctoral Program in 1992. She completed her clinical internship in 1992 at the University of Washington's School of Medicine, Psychiatry and Behavioral Sciences Department. Following this, she did a postdoctoral fellowship at University of Washington's Department of Rehabilitation Medicine. Lauren continued on in a faculty position at the University of Washington doing research, teaching and clinical work in the area of chronic pain and with adults who have acquired physical and cognitive disabilities and their families. In 2002, she changed her position to adjunct faculty at the University in order to spend more time with her family. She currently works part-time in private practice. Lauren lives in Seattle, Washington, with her husband, Mark Roth, who is an attorney, and their two children, Emma, who is 8 years old, and Madelyn, who is 5 years old. Emma was diagnosed with Prader-Willi when she was 5 weeks old. |
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FPWR Scientific Advisory Board |
