About Us

Welcome to PheoParaTroopers.org!

A Pheo Para Trooper is someone who is passionate about fighting pheochromocytoma and paraganglioma. Our goal is to empower and support patients while contributing anything we can to finding a cure for these diseases. If you are a patient, friend, or a family member of a patient, we hope you will join us in this important mission.

History

In 2010, four patients recognized the need for a patient-run group and started the Pheo Para Troopers. The goal was to facilitate patient communication, supply important information to patients such as links to special events, studies, and current research developments, and contribute to finding a cure for pheochromocytoma and paraganglioma by collecting and analyzing data from patients who also want to work toward our goals.

As patients, we are passionate about finding a cure, and we believe there are many more patients out there like ourselves who can help.

Vision

The Pheo Para Troopers over the next five years will:

  • Restructure in a manner that allows for global growth, board expansion and leadership, and the creation of an executive director role in order to facilitate our vision and mission.
  • Seek out global partnerships with other pheo/para supporters to form community for the common good.
  • Focus to raise funds, as well as seek grants, to move forward with patient initiatives that support data collection, treatment, collaboration, and advocacy.
  • Further increase our presence as the patient-created non-profit advocacy organization for pheo/para that supports, educates, and empowers patients about their disease.

Our Mission

To empower and support pheochromocytoma and paraganglioma patients globally through knowledge, education, advocacy, and camaraderie while sponsoring key initiatives in data collection, treatment, collaboration, and patient wellness.

Core Values

Advocacy – We are actively engaged in activism and awareness campaigns for our disease.

Care – We cherish our community and demonstrate compassion and empathy in our responsiveness to everyone we encounter.

Integrity – We demonstrate reliability in all of our interactions through honesty, ethical conduct, accountability, transparency, and fairness.

Collaboration – We benefit the most when we collaborate with stakeholders like other charities, the medical and scientific communities, government bodies, and the pheo para community.

Community – We strive to build a strong pheo/para population that gives hope, a sense of connectedness, and camaraderie. Together, we are strong.

Innovation – We continuously look for ways to improve our services to the pheo/para community. We are passionate about finding effective treatments and a cure.

Empowerment – We are committed to providing educational materials and medical information to the pheo/para community to enable patients and their supporters.

Our Motto

“For the patients, by the patients.”

Board of Directors

  • Allen Wilson

    President

    Allen Wilson is a business graduate with over 20 years experience in both the financial and manufacturing sectors. He is Managing Director of the Wilson Group of Companies, based in Belfast, N. Ireland since 1998, which remains on an expansionary path within the chemical manufacturing and specialist recycling markets throughout Ireland and Europe. An avid sportsman, qualified instructor and Hatha yoga tutor, Allen has a zest for life and energy that he is keen to put to good use. He was diagnosed with sporadic metastatic paraganglioma in October 2006 and was appointed to the Board of the Pheo Para Alliance in 2009.

    Allen is passionate about using his experience, networking and managerial skills to increase awareness of the work of the all forms of patient support through Pheo Para Patient Initiative. His 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.

    Allen Wilson
    President
  • Tisa Perra

    Vice President

    First acquainted with the Troopers by writing for the Drop Zone, Tisa Perra is an environmental professional in the energy sector and is working toward a bachelor’s degree in science. In her personal life, she is an avid cyclist, world traveler, and dancer.

    She had a carotid body tumor removed in 2002 and carries the SDHD mutation. She was later diagnosed with metastatic paraganglioma in her liver and underwent chemotherapy treatment until she received a liver transplant in 2010. Tisa also had a second carotid body tumor removed in 2010 after her liver transplant, and she is currently disease free.

    Passionate about advocating for pheo/para, Tisa hopes to break down the barriers to treatment and care. She enjoys connecting and meeting with patients and caregivers. Over the years Tisa has taken on various roles with the Troopers. It only seemed natural to ask her to join the board as we continue our mission, “For the patients, by the patients.”

    Tisa Perra
    Vice President
  • Matthew Capogreco

    Secretary

    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.

    Matthew Capogreco
    Secretary
  • Alisa Zaita

    Treasurer

    Alisa Zaita is a full-time real estate paralegal working for a boutique real estate law firm in New York City. She has spent 21 years in the real estate industry and has closed billions of dollars of commercial and residential transactions. She is the mother of four girls, Brittany (17), Sabrina (15), Ashley (12) and Sophia (12). She is the wife of retired NYPD Sgt., John Zaita. In October 2013, Brittany was diagnosed with metastatic paraganglioma. Brittany is treated at Memorial Sloan Kettering Cancer Center and has been seen once for testing at the NIH. Genetic testing revealed that Brittany has the SDHB mutation which was along Alisa’s family line.

    Alisa attended the Pheochromocytoma Symposium in Bethesda, Maryland and the Paratroopers conference, where she met many of the board members. Alisa is committed to finding the link to these mutations and a switch to shut it off, so no one will have to suffer from this disease in the future and those who have it now can be cured.

    Alisa Zaita
    Treasurer
  • Stephen Furlong, PhD

    Board Member

    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.

    Stephen Furlong, PhD
    Board Member
  • Aimee Powell

    Executive Director

    Aimee Powell is 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 like himself via outreach to patients and promoting public awareness of pheo/para. She has been 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.

    Aimee Powell
    Executive Director
  • Sharif Taha

    Board Member

    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.

    Sharif Taha
    Board Member
  • Dr. William F. Young Jr.

    Medical Advisor

    Dr. Young, is professor of medicine at Mayo Clinic College of Medicine. Certified by the American Board of Internal Medicine for Endocrinology, Diabetes, Metabolism and Nutrition, he practices at the Mayo Clinic in Rochester, Minnesota. Dr. Young’s clinical research focuses on primary aldosteronism and pheochromocytoma. He is an author of more than 200 medical articles on endocrine hypertension and adrenal and pituitary disorders, has presented at more than 300 national and international meetings, and has been an invited visiting professor at more than 100 medical institutions. Recently, Dr. Young served as the president of The Endocrine Society from 2012 to 2013, and he is the recipient of multiple awards and recognitions.

    Dr. William F. Young Jr.
    Medical Advisor
  • Dr. Debbie Cohen

    Medical Advisor

    Debbie L Cohen, MD is an Associate Professor of Medicine at The University of Pennsylvania. She is a nephrologist and is the director of the Clinical Hypertension Program at Penn. She has an interest in complex hypertension and adrenal hypertension and is the Director of the Neuroendocrine Tumor Program which focuses on the treatment and management of pheochromocytomas.

    She also has a research interest in alternative methods of treating hypertension and has a NIH grant studying the effects of yoga on hypertension. She has published more than 100 manuscripts and chapters in many prominent journals. She is involved in the The Pheochromocytoma and Paraganglioma RESearch Support ORganization (PRESSOR).

    Dr. Debbie Cohen
    Medical Advisor