Aimee Powell joined the Pheo Para Alliance in August 2017, after serving as Interim Executive Director for the Pheo Para Troopers. Prior to joining that organization, she worked as a freelance writer/designer with a strong background in technical and business communications. She began the freelance portion of her career to allow her the flexibility to care for her mother, who had for decades struggled with a host of worsening symptoms without an apparent cause. When her brother, John, was diagnosed with a carotid body tumor in 2005 an inherited syndrome was suspected. However, it wasn’t until 2014 that a diagnosis of pheochromocytoma/paraganglioma, caused by the SDHB mutation, was confirmed for both.
After losing her brother to the disease in 2015, she decided to concentrate her efforts on fulfilling her brother’s desire to help other patients via outreach and promoting public awareness of pheo/para. She is a past member of the Board of Directors for the African Well Fund, where she primarily worked on fundraising and publicity.
Aimee lives in southern California with her family.
Matthew is the Program and Events Coordinator for the Upstate Cancer Center. Having started as a public school teacher Matthew is determined to bring awareness and support to those who share in his disease and those who have yet to learn about it. He was first diagnosed with bi-lateral carotid paragangliomas asymptomatic at the age of 25 after insisting on testing due to a familial history.
During the course of treatment a third tumor was discovered behind the ear near the brain. Both carotid tumors were successfully removed and the brain tumor was treated both surgically and with Gamma Knife radiation. A few years later elevated heart rate and palpitations lead to the discovery of pheos on both adrenal glands and a heart paraganglioma. All three were treated surgically at the NIH and Matthew is currently tumor-free. There have been nine documented cases of this disease in Matthew’s family including his father, who lost the battle due to complications with a heart paraganglioma in 2009, and his brother.
Matthew has long lived by the motto “Seven times down, eight times up” and hopes to help relay that to the fight for all pheo para related diseases and the efforts of the Pheo Para Troopers.
Sharif Taha works in scientific communication at NantBioScience, an LA-based biopharma company focused on developing cancer diagnostics and therapies. Sharif’s professional background includes experience in the biotech, philanthropic, and academic sectors. Before joining NantBioScience, Sharif was a Program Officer at the Kavli Foundation, a nonprofit foundation supporting basic scientific research in nanoscience, neuroscience, and astrophysics.
Prior to his work at the Kavli Foundation, Sharif conducted neuroscience research at the University of Utah, where he focused on understanding brain mechanisms underlying addiction. Sharif was trained in neurobiology and physiology and received his Ph.D. from UC San Francisco. Sharif’s family has been affected by pheochromocytoma/paraganglioma, and he looks forward to increasing patient awareness and research efforts focused on the disease through his work with the Troopers.
Dr. Stephen Furlong joined AstraZeneca in 1997 where he worked for nearly 18 years in both pre-clinical drug discovery and clinical drug development. His pre-clinical work encompassed several disease areas including respiratory, inflammatory, and infectious disease, as well as neurology and psychiatry. He has also managed both global and local pre-clinical projects, including collaborative projects in psychiatric genetics with Shanghai Jiao Tong University and The University of Pennsylvania. In 2004, Dr. Furlong joined Discovery Medicine in AstraZeneca Clinical Development where he was responsible for defining biomarker technologies to support late stage Discovery and early Clinical Development projects in psychiatry. These biomarker approaches ranged from cognitive and electrophysiological measures to biochemical biomarkers for efficacy, tolerability and safety. While in Discovery Medicine, he also worked with pre-clinical and clinical project teams to help develop molecular diagnostics for infectious disease.
Beginning in 2008, Steve was Safety Science Lead in the Safety Science Section of Patient Safety where he had a global role in providing safety biomarker support to clinical project teams. In this role, he led cross-functional teams that coordinated biomarker work for drug-induced organ toxicity. He also had responsibility for overseeing collection of human biological samples used for biomarker qualification. Prior to joining AstraZeneca, Steve was on the faculty of Harvard Medical School and an Associate Immunobiologist at Brigham and Women’s Hospital. In 2015, he founded Better Biomarkers, a consulting company focused on clinical biomarker services. Steve has two nephews living with Pheo and is grateful for the opportunity to work with the PheoPara Troopers.
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.
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.
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. Salleyhas been diagnosed with the familial SDHB genetic mutation associated with paragangliomas. She lives in Washington, D.C. with her husband and two children.