 September 2026 Pheo Para NavigatorResearch | Clinical Care | Community | Progress Welcome to the first edition of the Pheo Para Navigator, the Pheo Para Alliance's new newsletter. Dear JoBeth, Welcome to the first edition of the Pheo Para Navigator, a name our Patient Engagement Committee chose to reflect the journey so many in our community share. Our goal is simple: to help you stay connected to what matters across the pheochromocytoma and paraganglioma (PPGL) community, from research and clinical care to patient resources, community connections, and opportunities to get involved. In this first issue, you'll find new resources, emerging research, updates from across our global community, and some remarkable examples of what we can accomplish together. Thank you for being part of it. With immense gratitude,
PATIENT PATHWAYSNew Pheo Para Patient GuideFinding reliable information shouldn't be another challenge after a diagnosis. Thanks to our Patient Engagement Committee and Medical Advisory Board, our new Pheochromocytoma and Paraganglioma Patient Guide provides clear information to help patients and caregivers better understand PPGL and navigate conversations about diagnosis, genetics, treatment, surveillance, and ongoing care. RESEARCH & REGISTRYMeet Dr. Priyanka Gupta and Our Research & Registry Advisory BoardWe are pleased to introduce Priyanka Gupta, PhD, as Chair of PPA's Research & Registry Advisory Board (RRAB) and Lead Principal Investigator of the Global Pheo Para Patient & Provider Registry. Dr. Gupta is a Staff Scientist in the Cancer Metabolism and Microenvironment Program at Sanford Burnham Prebys Medical Discovery Institute in San Diego. In her new leadership role with PPA, she will help guide the Registry's scientific direction and the RRAB's work. Joining Dr. Gupta is a multidisciplinary group of researchers, clinician-scientists, patients, caregivers, advocates, and PPA leaders who will help guide the Registry and PPA's broader research priorities. Meet the people helping move this work forward. Priyanka Gupta, PhDSanford Burnham Prebys Medical Discovery Institute, Chair, Research and Registry Advisory Board and Lead Principal Investigator (PI) of the Global Pheo Para Patient and Provider Registry  Karel Pacak, MD, PhD, DScAKESO Center for Adrenal Endocrine Tumors, Prague Chair, Medical Advisory Board; Member, Research & Registry Advisory Board; Co-PI, Global Pheo Para Patient & Provider Registry  Lisa AndersonTreasurer, Board of Directors and Member, Research and Registry Advisory Board  Justin Annes, MD, PhDStanford University Member, Research & Registry Advisory Board  Emma Boehm, MD, PhDPeter MacCallum Cancer, Member, Research and Registry Advisory Board  Saundra Dillon, BSWMember, Patient Engagement Committee and member, Research & Registry Advisory Board  Siobhan FarleyMember, Patient Engagement Committee and Member, Research & Registry Advisory Board  Samantha Greenberg, PhD, MS, MPH, CGCUT Southwestern  Betsy HeroldChair, PPA Board of Directors and Member, Research and Registry Advisory Board  Josheili Y. Llavona-Ortiz, DrPH, MSMayo Clinic, Member, Research and Registry Advisory Board  JoBeth McCarthy, DHSc, MPH, CPHMember, Research and Registry Advisory Board, and Co-PI of the Global Pheo Para Patient and Provider Registry  Kimberly Perez, MDDana-Farber Cancer Institute / Harvard Medical School  Denise SamockiMember, Research and Registry Advisory Board, Chair, Patient Engagement Committee  Allen WilsonMember, Research and Registry Advisory Board and Senior Strategic Advisor, Global Innovation and Intelligence RESEARCH COMPASS Precision Medicine Reaches Pheochromocytoma and Paraganglioma (PPGL) By Priyanka Gupta, PhD, Chair of the PPA's Research and Registry Advisory Board (RRAB) and Lead Principal Investigator, PPA's Global Pheo Para Patient and Provider Registry PPGL research is changing quickly, and scientists are learning more about how the genetics and biology of individual tumors may help guide treatment. In her article for The Navigator, Dr. Gupta explores emerging work in SDHB-mutant disease, biomarkers, targeted therapies, radionuclide therapy, artificial intelligence, and patient-derived tumor models. SCIENCE, COMMUNITY, & HOPEFrom Scientific Exchange to a Night of Hope PPGL Scientific ForumPheo Para Alliance and Dana-Farber Cancer Institute came together in Boston to explore the persistent challenges in diagnosing PPGL and emerging science from the National Institutes of Health, followed by an expert panel featuring Dr. Kimberly Perez, Dr. Hussam Alkaissi, and Dr. Jaydira Del Rivero. Special thanks to Dr. Kimberly Perez and Mary Adams for their partnership in making the Forum possible.  Honoring Jonathan Pascual & Bethel StevensJonathan Pascual received PPA’s Circle of Hope Award, recognizing his extraordinary commitment to the PPGL community while living with metastatic paraganglioma. Guest speaker Bethel Stevens shared her family’s journey and her book, written with love in honor of her late husband, David Stevens.  Community GenerosityTamara and Ron Schwarz generously offered a $10,000 matching gift in honor of PPA's Secretary of the Board of Director's, Lacey Koelling, to support PPGL research and the new Global Pheo Para Patient and Provider Registry. Our community answered the call, meeting the full match within hours that evening and generating $20,000 for research. We are enormously grateful for the generosity of the Schwarz family!  A TRANSFORMATIVE GIFT FOR PPGLIn honor of her childhood best friend, whose family has been deeply impacted by PPGL, Betsy Herold has committed $100,000 to PPA ($50,000 in 2026 and $50,000 in 2027) in honor of the Collins family. We are deeply grateful for this extraordinary investment in the PPGL community. BE A FORCE FOR GOODJP's Backyard Ultra/Hike: The Final EditionMore than 1,000 people came together in Napa, California for the final edition of JP’s Backyard Ultra & Hike, created by Jonathan Pascual, who is living with Stage IV metastatic paraganglioma. What began as Jonathan’s personal response to cancer grew into a remarkable community built around resilience, generosity, and his challenge to “Be a force for good.” In its final year, that community raised more than $60,000 in donations and contributed over $40,000 in in-kind gifts to support PPA’s work in critical PPGL research, closing healthcare gaps, and supporting patients and caregivers. The miles mattered, but the meaning went far beyond the course. More than 1,000 people showed what can happen when a community comes together for something bigger than itself. Building the Registry TogetherThe Global Pheo Para Patient & Provider Registry is being built for our community, and our community is making it possible. We are deeply grateful to every individual and family who has contributed to help bring this important research resource to life. Whether you gave in honor of someone you love, in memory of someone you miss, or because you believe in the future of PPGL research, you are helping build that future. Thank you to our Registry supporters.  The Pheo Para Alliance's mission is to empower patients with pheochromocytoma or paraganglioma, their families, and medical professionals through advocacy, education, and a global community of support, while advancing research that accelerates treatments and cures. Patients, caregivers, clinician-scientists, and advocates founded us in 2007. The Pheo Para Alliance is a registered 501(c)(3) nonprofit organization, incorporated in the state of Virginia. Tax ID: 26-1510652. |
