” 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 Stubbs Howard graduated from the University of Georgia with a degree in International Business. As the daughter of a fighter pilot, she grew up in various places around the world. Following a career as a corporate sales and account executlive, Jessica is now a stay-at-home mom.
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. Jessica lives in Georgia, with her husband Tom, their three sons, Riden (PWS), Cole, and Trent, and their rescue hound dog.
Shawn is currently a project manager at Lockheed Martin, where he leads a team responsible for repairing the Navy’s next generation helicopters. His work and leadership has helped the Navy maintain their mission capability and Fleet readiness. Prior to working at Lockheed Martin, he worked at Elcom, Inc, where he was an engineering sales representative, responsible for selling electronics to OEMs.
Shawn holds an M.B.A. from the University of Syracuse and a B.S. in Industrial and Systems Engineering from the Rochester Institute of Technology.
He lives in Endicott, New York with his wife Rachel and their two children: Ellie (PWS) and Shayna.
“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.
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.
Director of Finance and Investments
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.
Daniel Chorney is a Financial Advisor in the New York office of Bernstein Global Wealth Management. He is responsible for advising high net-worth families and institutions, as well as their respective trusts, estates, foundations, endowments and pension plans. Dan, in conjunction with Bernstein’s Wealth Management Group, works closely with each client’s trusted tax and legal advisors on all matters, including tax and estate planning, concentrated stock positions and sales of privately held businesses. In his prior role as National Director of Client Services, Dan oversaw and managed the client relationship teams that provide service to approximately 11,000 affluent families and institutions, as well as their respective trusts, estates, foundations, endowments and pension plans. Dan also works closely with Private Client financial advisors on all client servicing and support related issues managing over $23 billion in assets. He previously served as a senior business analyst for three years, responsible for leading firm wide strategic business initiatives related to product development, infrastructure improvement and international expansion. Dan joined the firm in 2003 as a private client associate. Prior to joining the firm, he was a senior specialist in the stock option group at Merrill Lynch.
Dan holds a BA in psychology from the University of Vermont and an MBA in finance and management from New York University’s Stern School of Business.
Rachel Fernandez Hansen
“When our son Pablo was a newborn, and we were still reeling from the shock of his diagnosis my husband and I learned about the FPWR. I remember the moment I understood the foundations work and mission. It’s as if a fog had lifted and a path had presented itself, our mission as parents was clear.”
Born and raised in San Diego, California, Rachel spent 15 years traveling the world as a flight attendant and chief purser with United Airlines before making Paris home with her husband, Reuben and her son, Elias. Her career as an international chief purser ceased with UAL’s Paris base closure in 2006. Realizing the mental and physical benefits of practicing yoga and pilates during her years in flight lead her to pursue her certification training as a Pilates instructor. Little did she know how much her knowledge of body, mind and muscle would become her starting blocks as she welcomed her second son into the world.
Rachel organized the first One SMALL Step walk in Paris in 2011, importing the idea that had taken root abroad. That first walk has turned into several walks in France, now Un PETIT Pas, and has forged a strong alliance between the FPWR and PW France. In 2012 Rachel attended a capacity building program for rare disease patient representatives involved at the European level in the development, approval, information and access to orphan drugs, pediatric drugs and advanced therapies hosted by EURORDIS. She has been in a unique position to reach out to other PWS families, while educating and inspiring others. Her international background and strong communication skills were put to work in creating a partnership between PW France and the FPWR, a model which she hopes to replicate throughout other European countries. She currently sits on the board of Prader-Willi France.
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).
“ Dante’s diagnosis of Prader-Willi Syndrome has taught me so much about the true meaning of life, priorities and patience. I choose to believe that we can eliminate the challenges of PWS, through the advancement of research and I am honoured to serve as a board member of this talented group of parents and professionals who are working toward an independent future.”
Tanya Johnson graduated from University of Toronto. She is a Special Education Resource Teacher in High School and works with students of various abilities including, Autism and Developmental Disabilities. Tanya lives in Mississaug, ON, Canada with her husband Keegan and 2 boys, Dante (7 years, PWS) and Denzel (6 years).
Tanya is the co-founder of FPWR Canada and founder of the One SMALL Step Walkathon which has recently become an international event and has raised over $1.5 million for the PWS Research Plan. Tanya is the co-chair of the international walk committee (with Susan Hedstrom) and is heavily involved with conference planning in both countries. She has played a key role in uniting families around the world to come together as “ONE” PWS community in order to eliminate the challenges of PWS.
“When my then-seven month old daughter Caitlin was diagnosed with PWS in July 2011, I had two questions, the first one was, ‘How can there not be medicine for the hunger?’ the second one was, ‘When I start fundraising for research where do I send the money?’ Both answers led me to the Foundation for Prader Willi Research.”
Jeannine grew up and currently lives in Los Angeles, California. She attended U.C.L.A. and received her B.A. in History and thereafter attended the University of Michigan Law School where she received her J.D. She is currently a practicing attorney and cultivating her fundraising skills. She has been an active fundraiser at previous non–profits and her children’s schools and is now applying those skills for the FPWR. She co-founded Prader Willi Angels, a 501(c)(3) which seeks to raise funds to support research initiatives geared toward solving the challenges of PWS, with a particular focus on curing hyperphagia.
Jeannine spends what little free time she has left with her husband Jerry, her son Andrew and daughter Caitlin.
Lauren Schwartz Roth
Lauren Schwartz Roth received a B.S. from the University of California, San Diego in Developmental Psychology and a Ph.D. in Clinical Psychology from the University of California, San Diego/San Diego State Joint Doctoral Program in 1992. She did her clinical internship and research fellowship at the University of Washington, Departments of Psychiatry and Rehabilitation Medicine. She has focused her studies and clinical work in the area of adjustment and recovery from disability with adults. She has a particular interest in the impact of disability on families and the interaction between family responses to disability and patient physical and psychological functioning. She is currently on the faculty at the University of Washington School of Medicine in the Department of Rehabilitation Medicine where she does clinical work, teaching and research.
She and her husband Mark, have two lovely and cleverdaughters, a 13 year old with PWS, Emma and Maddie who is 10 years old. Lauren is one of the founding members of the FPWR and served as Vice President of FPWR from 2004-2007 and then President of the FPWR Board of Directors from 2007-2010. She has also served on the FPWR Scientific Advisory Board since 2010.
Alice Viroslav, M.D.
Co-Founder of FPWR
“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.
FPWR Scientific Advisory Board