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Vol. LXV, No. 16
August 2, 2013
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Second Annual Pheo Symposium Draws International Crowd

NICHD researcher Dr. Karel Pacak (l) and NICHD director Dr. Alan Guttmacher kicked off the symposium
NICHD researcher Dr. Karel Pacak (l) and NICHD director Dr. Alan Guttmacher kicked off the symposium.
Scientists, students and patients from around the world gathered recently at NIH for the second annual International Patient Symposium on Pheochromocytoma. The event, sponsored by the Pheo Para Alliance, focused on current studies and the future of pheochromocytoma and paraganglioma research. Pheochromocytomas are tumors that originate inside the adrenal glands and paragangliomas are similar tumors that form outside the adrenals.

The symposium, held on campus at Bldg. 60, also included presentations on treatments for these conditions.

“It is important to have this conference because it brings together patients and researchers. It is important to be brought together because people next door and around the world will benefit,” said NICHD director Dr. Alan Guttmacher as he opened the symposium.

“There are no national or international groups that study pheochromocytoma and that is the most important thing to fix,” said Dr. Karel Pacak, a senior investigator in NICHD’s section on medical neuroendocrinology and long-time pheochromocytoma researcher. “It is important that we begin working with others to advance the research on these rare tumors. Together we stand a chance, separately we fail.”

Pacak spoke twice on the opening day of the conference, outlining the most recent research into the genes that are linked with the onset of pheochromocytoma and paraganglioma and describing upcoming research into positron emission tomography scans and other imaging techniques for pheochromocytoma and paraganglioma at NIH. He explained how 50 percent of pheochromocytoma and paraganglioma cases are not diagnosed or are misdiagnosed and are only found during autopsy. He also said that with “a lack of interest from young clinicians,” the outlook for pheochromocytoma and paraganglioma research was not positive.

Spelling out Team Pacak are (from l) Victoria Martucci, Clarissa Samson, Eric Laplano, Ivy Nisce and Alekhya Reddy, volunteers in NICHD’s Program in Reproductive and Adult Endocrinology.

Above: Spelling out Team Pacak are (from l) Victoria Martucci, Clarissa Samson, Eric Laplano, Ivy Nisce and Alekhya Reddy, volunteers in NICHD’s Program in Reproductive and Adult Endocrinology.

Right: NIH director Dr. Francis Collins sang and played his guitar as part of a trio.

Photos: Bill Branson

 

NIH director Dr. Francis Collins sang and played his guitar as part of a trio.

At the end of the first day of the conference, a musical performance took place, featuring Laura Pole and Greg Trafidlo, two members of the group Trifolkal. The two sang upbeat songs based on Pole’s knowledge of treatment from her time as a hospice nurse. NIH director Dr. Francis Collins joined the two to complete the trio.

Pole said the performance was meant to “spread the positive message of healing” through songs such as “Sanctuary” and “If Not Now, Tell Me When.”

“What is the difference between wellness and illness?” she asked: “We and I.” She explained that “wellness, brought through healing, is something that should never be done alone. Family and friends are what make the
difference.”

She continued, “Healing is different than curing. Curing is getting rid of an illness. Healing is what brings us back to a sense of wholeness.”

Wayne Zandbergen, who hosted the symposium, is the founding member of the Pheo Para Alliance, a support group that provides resources to patients and physicians dealing with pheochromocytoma and paraganglioma.

“This is not a symposium for the M.D.s and Ph.D.s,” he said. “We are here for the guy with a practice in Iowa. We are here to tell him what it will mean for him and his patient that the patient has pheochromocytoma. Those are the people who really matter.”


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