Our medical team has more than 100 years combined experience and expertise managing symptoms while guiding families through their unique journey that is Huntington Disease.
Gregory Suter, Executive Director
Gregory Suter currently serves as Executive Director of the Hereditary Neurological Disease Centre (HNDC). He has dedicated his life to the care and treatment of people with Huntington disease and their family members. He provides oversight for our volunteer, multi-disciplinary medical team and the general operations of HNDC, to include administration and fundraising. “Over the past 28 years, I’ve learned a lot from people who have HD; I’ve learned patience, the ability to listen carefully, and a greater appreciation for life.” Since 1987, Gregory has been involved directly with the monthly HD out-patient clinics, HD genetic testing program, and support group facilitation in four states. He oversees the brain/tissue donation program, education sessions and in-service implementation, and HNDC clinical and observational research studies. A member of the Huntington Study Group (HSG) research consortium since 1994, Gregory has served as a study coordinator for multiple HD studies to include PHAROS, PREDICT, COHORT, HORIZON (HORIZON PLUS), PREQUEL, CREST E, 2CARE, FIRST HD, and ARC-HD. In 2014, he was elected by his peers to serve as Study Coordinator Representative on the HSG Executive Committee. “I take the role and responsibilities of a study coordinator very seriously. I understand that it is often the coordinator that not only is responsible for the study components specifically, but also key in the recruitment and retention of subjects in multiple studies at the same time. Communication is very important; and I’m not afraid to ask questions…” Yes, Gregory is a guy that makes juggling multiple responsibilities look easy, while at the same time, someone who isn’t afraid to ask questions to save time…and time lost is lost forever. He knows time is precious to our HD families.
William Mallonee, MD
An Oklahoma native and graduate of the University of Oklahoma College of Medicine, William Mallonee, MD, is a Board Certified Neurologist in private practice at the Hutchinson Clinic. He serves as a volunteer for the Hereditary Neurological Disease Centre and is Medical Director. Yes, he’s the rare physician who volunteers his valuable time monthly, for he knows time is precious to our HD families. He is an expert in the care and management of persons with Huntington disease, and in the 29 years of working with Huntington disease, he has seen people with HD from 32 states, Canada and Mexico – approximately 7000 people – and is now seeing third and fourth generations of families with HD. “This is a rare, progressive disease, with not a lot of options for treatment. Sometimes just adding information and support by letting people know we are there for them and their family makes a big difference…it is a privilege to assist them on their journey that is Huntington disease”. In large part driven by the interest of our HD patients and their family members, the Hereditary Neurological Disease Centre became more involved with research under his guidance. A member of the Huntington Study Group (HSG) since 1994, he has served as site Principle Investigator for many observational and clinical HD research trials. “Research holds the key to new treatments and an eventual cure. I’m happy to play a part in advancing the scientific knowledge, while offering hope to the next generation at-risk for HD.”
Julie Scherz, PhD., CCC-SLP, ASHA Fellow (Speech Therapist)
Julie Scherz, PhD, leads a very full professional life and is a volunteer Speech-Language Pathologist at the Hereditary Neurological Disease Centre. She currently serves as an Associate Professor and holds the position of Chair of the Communication Disorders and Sciences Department at Wichita State University (WSU). In addition, she is the NCAA Faculty Athletic Representative, the liaison between academics and athletics, appointed by the WSU President. For the past 10 years, she has also served as an accreditation team site visitor for the American Speech-Language-Hearing Association…and there is much more that keeps her busy. Being part of the Hereditary Neurological Disease Centre is far more than volunteering; it’s helping those with Huntington disease, sharing her expertise with family members confronting challenges with speech and swallowing, and assisting students in learning more about the disease. “I’m blessed to have a meaningful career, and I’m grateful for my education and the opportunity to give back.” Dr. Scherz often has graduate students accompany her to our monthly clinics. Currently, she is overseeing two student research projects on Huntington disease.
Karen Miller, LPN (Licensed Practical Nurse )
Originally from Indiana, Karen Miller, LPN, received her nursing degree at Glen Oaks Community College, Centreville, Michigan, in 1975. She learned about Huntington’s disease firsthand in the late 1980’s while working at Mennonite Manor in South Hutchinson, Kansas. She helped care for the needs of a family in which we still have descendants seen through our clinic. She is a familiar face to those seen through the Hereditary Neurological Disease Centre HD Clinic. Her quiet understanding, and confidence while taking the family history and vitals each month, makes her role appear effortless…and has kept her involved for over 15 years. “We as a team each have a role; showing kindness and a caring attitude is what I try to share with our patients and their families. I hope to bring encouragement and help brighten the day for these deserving people. We are in this together, and seeing them regularly has allowed us to become friends.” Karen has been a key player in multiple HD clinical trials, observational studies and fulfills many study role responsibilities. In addition to being a mother of 3 children, Karen and her husband, Glenn, love spending time with their 11 grandchildren. She enjoys working with people and has worked in the Hutchinson Clinic Neurology Department with neurologist William M Mallonee, MD, for the past 23 years.
Debbie O'Conner, RN (Registered Nurse)
Debbie O’Connor, RN, learned about a nursing need at the Hereditary Neurological Disease Centre from a friend in 2008. She received her Bachelor’s Degree in Nursing Science at Wichita State University and is a longtime Wichita resident. Currently serving as Nursing Manager of Patient Care Services for a large Wichita physician group, she has experienced an extensive nursing career full of challenges. Complimenting her nursing career, Debbie is an active community volunteer. She felt her involvement with the Hereditary Neurological Disease Centre would be a great way to provide service to the HD population. Believing that each day provides new information and insight, Debbie continues to learn about the disease from those she encounters with HD. “Difficult times have helped me understand that things that you worry about, when compared with the challenges of others, are often of no importance whatsoever.” Through the multiple drug studies in which she has played an active role, Debbie has witnessed the benefits of study participation and research advancements. She strongly believes that getting HD families involved is key with Huntington’s disease and is excited about the work being done at HNDC. “My relationship with Huntington’s patients has literally changed my life, in both outlook and expectation, and I am thankful for the opportunity to put my talents to work in helping those with HD.”
Norberta Robertson, LMSW (Licensed Master Social Worker)
Norberta Robertson, aka “Birdie”, began her involvement with HNDC many years ago as an event volunteer. Her interest in Huntington’s disease quickly moved forward in 2012 when she joined the HD Clinic Medical Team as a volunteer Social Worker for the monthly HD clinic. In late 2014, she stepped into the research arena in a clinical trial as a Capacity Rater. Looking for a change out of mainstream case management duties, in May, 2015, Birdie joined the staff at HNDC as a full time Social Worker and research assistant. “Early on as a volunteer, I experienced that even small assistance to someone with HD brought about significant differences in the quality of life for that person, their caregiver and the family as a whole.” She is a Washburn University graduate, obtaining her Master’s degree in Social Work from Wichita State University. Her experience includes working with severe and persistent mental illness adults (SPMI), serious emotional disorders (SED), elder care, and substance abuse. In addition to her duties as Social Worker, she currently co-facilitates the Wichita monthly HD support group, is active with HNDC fundraising and is a co-coordinator for the ENROLL-HD study.
Julie Unruh, Receptionist
Julie Unruh is often the ‘first face/first voice’ family members encounter when they contact HNDC or enter the office, serving as receptionist and research assistant in the ENROLL HD study. She has a 20-year long relationship with HNDC because of her own family history of Huntington’s disease. “My grandfather had HD. He and my grandmother had nine children, four of which developed HD; my mother, two aunts and an uncle. I know what it is to be raised in a family where the symptoms of HD took over the health of my loved ones. It was hard to watch then, and still is difficult now knowing some of my family remain at risk.” Julie’s personal journey with HNDC was strengthened in 2002 when she had the HD genetic test done to obtain information about her own gene status. Her personal story was featured as an article she wrote for the Wichita Eagle, a framed copy of which hangs in the HNDC office. “Having had these experiences makes me want to help others struggling with HD. I feel a kindred spirit with families who come into the Centre with questions and concerns. I’ve walked in their shoes; have felt the same worries and concern as those coming here for information.” She shares her personal excitement about being involved with the research being done and feels confident that one day, because of the work done at HNDC, there will be a cure for Huntington’s disease.
Claudia L. Hohnbaum, MA, RDN, LD (Dietician)
Registered, licensed dietitian, Claudia Hohnbaum, MA, RDN, LD has been a volunteer member of the HNDC medical team since 1987. “The health and well-being of everyone is dependent on good nutrition. For those with HD, it is even more vital.” Claudia’s professional roles have included that of a hospital dietitian, nursing home consultant and assistant director of a nonprofit for the nutrition education of kids. These diverse work experiences have given her a unique perspective as to the role food and nutrition plays with people at all ages who have unique circumstances and difficult challenges in their everyday lives. This alum of Iowa State University and the University of Iowa, has also served a number of positions on professional boards and has been a recipient of the Distinguished Dietitian of the Year for Kansas award.
Juliet Gay, MPT
A native of Stillwater, OK, Juliet Gay, MPT, received her Master of Science degree in physical therapy from Rockhurst University in Kansas City, MO in 1999. She spent the early years of her career in Houston, TX, where she had the opportunity to work at The Institute for Rehabilitation and Research (TIRR) in their outpatient neurological facility working with people with various neurological diseases and traumatic injuries. She first encountered Huntington’s disease after her aunt was diagnosed in 2011. Currently, she has extended family members who have HD. She is passionate about applying her many years of skills and knowledge as a physical therapist, directing her knowledge to help support and improve the lives of people and caregivers living with Huntington’s Disease.