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Upstate hosts International Conference on Pheo Para

Conference will take place at the CNY Biotech Accelerator

Syracuse will host what is expected to be the largest single gathering of patients who have battled pheochromocytoma and paraganglioma, a rare condition marked by cancerous tumors.

Nearly 75 patients from North America are expected to gather with health care providers and researchers—some from as far away as Japan and Australian—June 6 through 8 to participate in the 2019 International Pheo Para Conference, to be held at the CNY Biotech Accelerator on Upstate Medical University campus.

The conference is sponsored by the Pheo Para Alliance, Upstate Urology and the Upstate Cancer Center.

Pheochromocytoma and Paraganglioma, better known as Pheo/Para, are neuroendocrine tumors that can present challenges to treat and diagnose. The incidence of pheo/para is two to eight per million people per year, with cases occurring in both men and women, and equally across all races. Many patients present with one adrenal tumor, which is removed and the cause is not determined. In rarer cases, the tumors are recurrent. Of patients with recurrent disease, 50 percent will experience distance metastasis. The five-year survival rate for those patients is 40 to 45 percent.

“This conference represents an important opportunity for Syracuse, as we attract leading clinicians, researchers and patients from near and far to explore the latest findings on this medical condition,” said Gennady Bratslavsky, MD, professor and chair of Upstate Urology and division chief of Urology Oncology. “By way of Upstate, Syracuse is becoming an important resource and destination for the treatment and management of pheochromocytoma and paraganglioma.”

Bratslavksy will address the conference at 1 p.m. Friday on the Surgical Approaches for Pheochromocytoma and Paraganglioma.

Conference and Grand Rounds keynote speaker will be Karel Pacak, D.Sc., M.D., Ph.D, an international expert in the diagnosis and treatment of nueorendocrine tumors, especially pheochromocytoma and paraganglioma.

Pacak, a leading researcher in the field, established in 1998 a new Program for Neuroendocrine Tumors focusing on pheochromocytoma and paraganglioma at the Eunice Kennedy Shriver National Institute of Child Health and Human Development. He is a recipient of numerous awards including the Peter Heimann Memorial Award at Yale University, International Association of Endocrine Surgeons; NIH Director's Mentor Award, Award for Cure from Pheo & Para Alliance, NICHD Director's Award of Merit, Pincus Taft Memorial Lecture the Highest Award from Endocrine Society of Australia, and Jessenius Gold Medal from Slovak Academy of Sciences. Pacak is the author of more than 305 scientific peer-reviewed articles, 98 book chapters, and 5 books. He is recipient of numerous honors, including the Peter Heimann Memorial Award at Yale University, the NIH Director’s Mentor Award and the Jessenius Gold Medal from the Slovak Academy of Sciences.

A pre-conference Grand Rounds presentation and dinner with Pacak will be held June 6 from 6 to 9 p.m. at the Crown Plaza Hotel, 701 E. Genesee St.

The conference opens Friday, June 7 at the CNY Biotech Accelerator, 841 E. Fayette St. The schedule of presentations, in addition to Pacak’s keynote address, is below:

“This conference provides an opportunity for the research, physician and patient populations to be together in the same room, discussing the latest advancements in screening, diagnosis, treatment, and support services for those suffering from pheochromocytoma and paraganglioma,” said Matthew Capogreco, program and events coordinator of the Upstate Cancer Center. “This conference will do more than just scratch the surface. We’ve gathered an incredible group of speakers and will have both expert and patient panels. I think attendees will leave this event better informed and with a clearer path moving forward.”

Sessions for Friday, June 7

—Pheochromocytoma and Paraganglioma : What every Endocrinologist (and Physician) Needs to Know, presented by Ruban Dhaliwal, MD, MPH, Assistant Professor of Medicine, Upstate Medical University, Division of Endocrinology, Diabetes and Metabolism.

—Pheochromocytoma and Paraganglioma Diagnostics, presented by Lauren Fishbein, MD, PhD, MTR, Assistant Professor in Medicine, University of Colorado School of Medicine, Division of Endocrinology, Metabolism and Diabetes, Division of Biomedical Informatics and Personalized Medicine

—Genetic Implications for Pheochromocytoma and Paraganglioma, presented by Justin Annes, MD, PhD, Endocrine Oncology Cancer Care Program, Head of Pheochromocytoma / Paraganglioma Program, Assistant Professor of Medicine, Division of Endocrinology, Stanford University

—Pediatric Pheochromocytoma and Paraganglioma, presented by Jonathan Riddell, MD, Assistant Professor of Urology, Upstate Medical University

—Surgical Approaches for Pheochromocytoma and Paraganglioma, presented by Gennady Bratslavsky, MD, Professor and Chair of Urology,  Division Chief of Urologic Oncology, Upstate Medical University.

—Non-Surgical Approaches for Pheochromocytoma and Paraganglioma, presented by Joseph Dillon, MB, BCh, BAO, Associate Professor of Endocrinology, Associate Director of the Neuroendocrine Tumor Clinic, University of Iow

—Future Opportunities of advanced Pheochromocytoma and Paraganglioma results of modern genetic sequencing, presented by Jeffrey Ross, MD, Assistant Professor of Pathology, Upstate Medical University

—Differences between Paragangliomas and Pheochromocytomas in malignant potential, in 80 Japanese patients, presented by Shoichiro Ohta, MD, PhD, Professor, School of Nursing, Fukushima Medical University, Japan

—Expert panel

Sessions for Saturday, June 8

—Pheochromocytoma and Paraganglioma Research: What’s on the Horizon, presented by Roderick Clifton-Bligh, BSC (med) MB BS (hons) FRACP PhD FFSc (RCPA), Head of Department of Endocrinology, Royal North Shore Hospital, Conjoint Associate Professor in Medicine, University of Sydney

—Wellness For the Pheochromocytoma and Paraganglioma Patient, presented by Kaushal Nanavati, MD, Assistant Professor of Family Medicine, Medical Director of Integrative Therapy, Upstate Medical University

—Navigating the System, presented by Bonnie Bennett, BSN, RN, Nurse Coordinator, Neuroendocrine Tumor Treatment Program, University of Pennsylvania

Patient Stories and Panel Discussion and Caregiver Presentation.

More on Pheo/Para

Common symptoms of pheo/para are:

• Heart palpitations

• Racing heart rate, even while resting

• High blood pressure
• Excessive sweating

• Attacks similar to panic/anxiety attacks (these may occur in response to exercise or for no apparent reason)

• Chest/abdominal pain

• Headache

• Vomiting

• Fever

• Pallor

• Flushing

• Muscle weakness

Although the causes of pheo/para are unknown, there are multiple avenues for treatment available. Surgery to remove tumors completely is preferable, but requires weeks of preparation to ensure that the patient can safely have the tumor removed. Treatment options also include radiotherapy, radio frequency ablation, transarterial embolization, 1-131 metaiodobenzylguanidine, cytoxic chemotherapy and molecular targeted therapy.

More details about the conference are available here: www.upstate.edu/pheo

Caption: The CNY Biotech Accelerator will host the International Pheo Para Conference.