Emily Collins joined the PheoPara Alliance Board of Directors in 2007 to further her commitment and dedication towards achieving increased awareness and research of Pheochromocytoma and Paraganglioma. In addition to her service on the PheoPara Alliance Board, Ms. Collins has long advocated and participated on behalf of various public interest organizations in the Washington, DC area. While Ms. Collins plays an active role in multiple community initiatives, she has made the advancement of Pheochromocytoma research a primary objective. As both the wife and mother of Pheochromocytoma patients, Ms. Collins understands the far reaching effects of this disease and pledges to work with the Board towards achieving a national awareness of this disease and eventually a cure. Ms. Collins received her Bachelor's degree from Chestnut Hill College in Philadelphia and resides in Washington, DC. She is married and has three children.
As Betsy likes to say, she spent twenty years raising children and then thirty years raising money for and serving on boards and committees of non-profit organizations.
Some of the many organizations she has fundraised for include the Huntington Hospital in Huntington, New York and the Martin Health System in Stuart, Florida. She has chaired several major fundraisers, most recently the 2016 Chrysanthemum Ball in Stuart, Florida which raised over $650,000.
Named to the National Register of Historic Places, the Lyric Theatre in Stuart, Florida has served the community of Stuart since 1926. As a member of the Lyric Theatre's Board of Directors, Betsy raised funds for and helped to implement major renovations in 2014. Since 1996, Molly's House in Stuart, Florida has provided a home away from home for more than 17,000 while they or a loved one were receiving medical treatment. Besides being a long time supporter of Molly's House, Betsy has served on the Board for three years and is currently serving as Vice President of the Board.
In addition to the Board and fundraising experience Betsy brings to the Alliance, she also brings passion as a dear friend of hers from childhood and his family have the disease. Betsy has seen what this disease can do but she has also seen the results brought about by research and education and she looks forward to the opportunity to see this continue and ultimately find a cure.
Gisela B. Huberman is the president of GBH Radio, Inc, a Florida company, formed and managed by Ms. Huberman. Established in 1999, GBH Radio, Inc. owns telecommunication towers in Florida, North Carolina and Maryland. From 1985 to 1998 Ms. Huberman was the founder and majority partner of HVS Partners, a company that owned and operated twelve radio stations in Florida, Maryland and North Carolina. Prior to forming HVS Partners, from 1980 until 1985 Ms. Huberman practiced as an attorney in Washington, D.C. in international and communications law. She worked in Arent, Fox, Kintner, Plotkin and Kahn, and also Fried, Frank, Harris, Shriver and Kampelman. From 1970 to 1980, Ms Huberman was a member of the faculty at American University (AU) in Washington, DC. She served as Chair of the Department of Languages and Foreign Studies at AU in 1979-1980. From 1970 until 1980 she was an Associate Professor of Linguistics and Romance Languages at AU. In 1975 she founded and was the first head of American University Ad-hoc Committee on Women’s Affairs. She was also a member of the Faculty Senate. Ms. Huberman holds A.B. (1964), M.A, (1965), and Ph.D. (1970) degrees from The George Washington University. In 1980 she received a Juris Doctor degree from the American University. She has been a member of the District of Columbia bar since 1981 and was admitted to the Supreme Court of the United States in 1984. In May 2006 she was elected to the Board of Trustees of American University. She is also a member of the Board of Directors of the Pheo-Para Alliance, a member of the Board of Directors of Moment Magazine and a member of the Arts Advisory Council of the Katzen Center of American University. The author of many articles and a book on linguistics, Ms. Huberman has published two books of fiction. Born in Mexico, she is married and has two sons.
Known as an authority on grantsmanship, Shirley R. Kullen, Ph.D., was a groundbreaking scholar in Epidemiology and Service Review at the National Institutes of Health. During her decades in the field, she was an international source of information in community mental health and psychiatric epidemiology. She worked closely with scientists throughout the United States, Canada, Denmark, and Israel. She holds the distinction of being the first woman to be awarded a Ph.D. from the Kogod School of Business at American University. She has taught at NIH, American University, and Howard University. Elected to the Advisory Board, Mental Health Section, of the American Public Health Association, she is also listed in Who’s Who in the World, Who’s Who of American Women, and Who’s Who in Medicine and Science. Her education includes: Postdoctoral Training in Epidemiology at Johns Hopkins University and University of North Carolina, Chapel Hill; Ph.D. at American University, Washington, D.C., Finance Related to Community Mental Health Dissertation: “An Evaluation of Funding Patterns of Community Mental Health Centers”; M.B.A. from American University, Washington, D.C., in Human Relations and Computer Sciences; B.S. from American University, Washington, D.C., Statistics and Economics, with Honors. She lives in Chevy Chase, Maryland, and Palm Beach, Florida, and is the mother of two sons.
Destina Moga lives in Westlake, Ohio with her children, Isabella, who is seventeen and Marcus, who is fourteen. She emigrated from Romania in 1979 when she was nine years old.
Ms. Moga attended college at Gannon University in Erie, Pennsylvania for a major in Political Science. After college, she attended Cuyahoga Community College and received an Associate's degree in Early Childhood Education.
Destina works with her mother Stella Moga. They own a chain of 13 childcare centers and private elementary schools, Le Chaperon Rouge, in Northeast Ohio. In business for thirty-four years, they employ three hundred teachers and have fourteen hundred families that drop off their children to their schools every day.
Their schools’ philosophy is "happy teachers equal happy children." Le Chaperon Rouge students score two to three grades higher on national tests.
Destina’s daughter, Bella, was diagnosed in 2009 with having inherited the SDHB gene mutation from her father. She had a 5 centimeter tumor removed from her abdomen that was attached to her inferior vena cava. Since the surgery, Bella has not had much trouble with the disease. Unfortunately there is a high likelihood that Bella will continue to grow new tumors throughout her lifetime.
The family knows this is a tough disease. They have learned to take life one day at a time and not worry about the future. The quote that sits on a plaque in their foyer says it all, “Life is not about waiting for the storm to pass. Life is about learning to dance in the rain.”
After graduating Hofstra law school in 1982, Mr. Spelke began his legal career with a law firm in Long Island, New York litigating transportation issues. In 1983, he joined the United States Department of Justice with the Civil Rights Division, Special Litigation Section. There, Mr. Spelke protected the federal constitutional rights of institutionalized individuals. This included those incarcerated in state institutions as well as patients housed in state mental health facilities. In 1987, Mr. Spelke joined the United States Attorney’s Office for the District of Columbia where he prosecuted a variety of local and federal crimes committed in the District of Columbia. He served in the Appellate Division, Misdemeanor Trial, Felony Trial, Grand Jury, Violent Crimes, Narcotics Section and the Homicide Unit. He completed well over fifty jury trials, twenty non-jury trials and countless motion hearings/arguments. In 1997, Mr. Spelke accepted a position with the Drug Enforcement Administration (DEA) where he was appointed chief of the Domestic Criminal Law Section. This section was responsible for providing legal advice to DEA Special Agents, Chief Counsel of DEA, United State’s Attorney’s Offices and other key Department of Justice components on current law, DEA operations, policy and procedures. In January of 2003, Mr. Spelke took a position with the Narcotics and Dangerous Drug Section, Criminal Division, United States Department of Justice. In this position, Mr. Spelke investigated and prosecuted high-level commanders and those in control of international drug organizations. He would work with both national and international law enforcement to break criminal syndicates that were equally coordinated, international in scope, violent and well financed. In 2011, Mr. Spelke left the federal government and started his own law firm in Washington, DC that focuses on foreign nationals accused of crimes in the United States.
Mr. Spelke is no stranger to the goals of the Pheo Para Alliance. His first tumor appeared in 1975, when he was just 18 years old. After surgeries for a tumor in his stomach, a carotid body tumor, a pheo in his adrenal gland, radiation for a glomus jugulare tumor, Mr. Spelke was accepted at NIH in 1988. He underwent chemotherapy and has been a patient for the past 26 years. In this time, Mr. Spelke has seen the number of patients, research and treatment for our disease at NIH grow exponentially. Mr. Spelke has expressed his gratitude for the opportunity to serve this worthy cause.
Allen Wilson is a business graduate with over 20 years experience in both the financial and manufacturing sectors. In 1998, Allen was appointed the Managing Director of the Wilson Group of Companies, based in Belfast. N. Ireland, which remains on an expansionary path within the chemical manufacturing and specialist recycling markets throughout Ireland and Europe. An avid sportsman and Hatha yoga tutor, he was diagnosed with sporadic metastatic paraganglioma in October 2006 and is truly passionate about using his experience, networking and managerial skills to increase awareness of the work of the Pheo Para Alliance. Allen's emphasis is to reach out to patients throughout the world by promoting the pursuit of earlier and better detection and diagnosis of Pheochromocytoma, whilst helping to develop improved treatments and ultimately pursue a cure for this rare and orphan group of diseases.
Currently serving as a Chief of Staff in the U.S. House of Representatives, Salley has worked on Capitol Hill for over 10 years working to develop and execute strategic initiatives related to legislative and organizational operations and communications. Prior to her work on the Hill, she spent 6 years working at the National Association of Broadcasters where she worked on the conception and management of national consumer, public policy, and grassroots campaigns. Salley has been diagnosed with the familial SDHB genetic mutation associated with paragangliomas and is part of NIH’s genomics study. She lives in Washington, D.C. with her husband and two children.