speakers bureau

Linda Rose-Krasnor, MASc, PhD

Chair, Board of Directors

Linda Rose Krasnor is currently a Professor Emeritus at Brock University, which is located in southern Ontario, Canada.  She is a developmental psychologist, with particular research interests in social development and youth engagement.  In addition to her teaching and research responsibilities, Linda served as President of the Brock faculty union and was active in the University Senate, serving terms as Chair of the Senate’s Governance and the Planning, Priorities, and Budget Advisory committees.  Since becoming involved in the Pheo Para Alliance, Linda has been part of the peer support initiative, helping to develop the peer support training module and facilitating the monthly peer support calls.

Although asymptomatic, in 2009 Linda was assessed for pheocromocytoma/paragangliomas following the diagnosis of multiple paraganglomia in three close family members.   Linda’s testing indicated bilateral neck paragangliomas, which subsequently were determined to be glomus vagale tumors.  One was been surgically removed in 2016, with accompanying vagal nerve damage resulting in a paralyzed vocal cord and Horner’s Syndrome.  With further surgery and extended speech therapy, Linda’s voice has recovered and she is being monitored yearly for growth in the remaining tumor. Linda and her family have the SDHD mutation.

In her role as a Board member, Linda is looking forward to helping advance the important and much needed educational, support, and empowerment functions of PPA and to strengthen its critical role in promoting research into prevention, diagnosis, and treatment.  She is specifically interested in increasing our understanding of the socio-emotional implications of living with pheo/para, especially for children and youth.

Linda received her B.A. in psychology from Boston University and her M.A.Sc. and Ph.D. in developmental psychology from the University of Waterloo.  In addition to her work with PPA, Linda volunteers as a leader of adult and children’s bereavement groups for Hospice Niagara.

Michael L. Campbell

VICE-CHAIR

Michael L. Campbell is the Chief Operating Officer of the Mark Twain House & Museum in Hartford, CT. Mark Twain wrote most of his well-known works from this house and spent more years there than he did in any other place. Michael helps to keep the legacy of Mark Twain and his family alive by assisting 80 employees. He has served the nonprofit community in the Greater Hartford area for nearly 40 years. He was the Executive Director of SummerWind Performing Arts Center in Windsor, CT and was Chief of Staff for the Girl Scouts of Connecticut. He also served as National Development Director for the US Naval Sea Cadet Corps in Arlington, VA, responsible for all advancement efforts nationwide for this youth development organization. One of Michael’s favorite roles was Executive Director of the Hartford Children’s Theatre. His duties there included development, finance, operations and the management of all programs that led the organization to receive the New England Theatre Conference’s award for best youth theatre production in New England. Michael was a fixture at the Producing Guild, a premier non-equity theatre for over 15 years as Business Manager, Production Manager, Actor, Singer and Production Assistant. He has served on many local, national, and international boards with experience in all areas of nonprofit governance and management.

Michael was diagnosed with a pheochromocytoma in the summer of 2021 and spent over a month in the hospital at the University of Connecticut Health Center. His surgery was successful and he vowed to give back to community. Michael has traveled to over 50 countries, is a former mountaineer and has served in uniform as a Lieutenant Commander acting as a mentor for the US Naval Sea Cadet Corps. With his wife Rie and their three cats Shiraz, Zambezi and Colaba he lives in Canton, CT.

Lisa Anderson

TREASURER

Lisa Anderson is a “mother on a mission” determined to help others avoid a long and excruciating journey toward a pheochromocytoma or paraganglioma diagnosis. After seeking answers for nearly 5 years that would explain her college-aged son’s debilitating symptoms (headaches, blood pressure swings, irregular heartrate, sweating, nausea, vomiting and extreme panic/anxiety), a suspicion of a pheochromocytoma tumor was finally discovered through incidental testing by a gastroenterologist who ordered an ultrasound to investigate a potential gallbladder issue. The time from diagnosis to tumor removal surgery became a whirlwind of searching PubMed articles about pheo, coordinating with the surgical team, cross-checking every well-intended medication, and caring for her precariously sick son who required 24-hour hospital care until the surgery date.

After learning a blood and/or urine test to check metanephrine levels when the symptoms first appeared could have signaled this adrenal tumor, Lisa has made it her mission to look for ways to raise awareness about this disease with health care providers. She has found a place with Pheo Para Alliance (PPA) to channel her energies. Throughout her more than 30-year career at the Fred Hutchingson Cancer Research Center in Seattle, WA, Lisa has had the opportunity to cultivate relationships with physicians, scientists, residents, fellows, administrators, and volunteers with whom she worked collaboratively to support cancer research with special emphasis on patient needs. She hopes to use her experience in health care administration and knowledge of health care systems to access an array of medical professionals and organizations to remind them to “think about pheochromocytoma and paraganglioma” so that others will not have to endure an unnecessary and potentially dangerous delay in diagnosis.

Lisa holds a BA in Spanish from the University of Washington, and a Masters in Teaching from Western Governor’s University. When she’s not happily volunteering with the PPA, she loves substitute teaching at the local

Karel Pacak, MD, PhD, DSc

CHAIR, MEDICAL ADVISORY BOARD & MEMBER, BOARD OF DIRECTORS

Dr. Pacak is a board-certified endocrinologist and an internationally recognized expert in the diagnosis and treatment of neuroendocrine tumors, especially pheochromocytoma and paraganglioma. He graduated summa cum laude from Charles University, Prague, Czech Republic in 1984. In 1990, he began his postdoctoral fellowship at NINDS. In 1995, Dr. Pacak began his residency in internal medicine at the Washington Hospital Center under Dr. L. Wartofsky, followed by a fellowship in endocrinology, diabetes, and metabolism at NIH. In 1998, he established a new Program for Neuroendocrine Tumors focusing on pheochromocytoma and paraganglioma at NICHD. He received his Ph.D. in 1993 and his D.Sc. in 1998 in the field of neuroendocrinology from Charles University. In 2006, he was awarded a lifetime professorship in Internal Medicine at Charles University.

Dr. Pacak established the International Symposia on Pheochromocytoma. He also helped co-found a new Asian Alliance for the Study of Neuroendocrine Tumors in 2010. 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. Dr. Pacak is the author of more than 305 scientific peer-reviewed articles, 98 book chapters, and 5 books.

Shonna Snyder, PhD

MEMBER

Shonna Snyder is a paraganglioma patient. She earned her Ph.D. in Health and Kinesiology from Purdue University, and is also a Certified Health Education Specialist (CHES). She is a co-author of the text Core Teaching Practices for Health Education, and currently works as a Research Scientist for The Mast Cell Disease Society. Her professional interests and research are in the areas of professional preparation and development of health teachers, school health education, adolescent health issues, and most recently, rare diseases and the patient perspective.

Shonna was diagnosed with a bladder paraganglioma in 2019 after many years of extreme symptoms in which doctors dismissed as such things as stress, fatigue, panic attacks or POTS. Given her research and health education background, she knew that these diagnoses were not accurate and so she continued to push for further testing. She visited multiple doctors who did not believe her when she suggested that she had a pheo/para in her bladder and so she struggled to get the CT that she requested. She finally had a doctor truly listen and order the CT scan she needed in July of 2019 after five trips to the ER in one week. Her surgery took place in November of 2019 at the NIH.