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Who We Are - KSEC (Kidney Stone Engagement Core)

Introduction

The KSEC is dedicated to engaging with patients, caregivers, clinicians, and researchers to develop valuable comparative effectiveness research in the field of kidney stone disease. Our team recognizes the importance of understanding the patient voice and fostering a supportive community to drive impactful outcomes. 

By actively involving all stakeholders in our research endeavors, we aim to not only generate evidence-based insights but also to ensure that the patient perspective remains at the forefront of our work.

Through collaborative efforts and open communication, we strive to address the unmet needs of individuals affected by kidney stone disease and to ultimately improve the quality of care and outcomes in this field. Our commitment to inclusivity, transparency, and patient-centered research drives us forward in our mission to make a meaningful difference in the lives of those impacted by this condition.

The Team

KSEC is composed of individuals who are dedicated to enhancing the patient voice in kidney stone research. We are patients with kidney stones, caregivers who care for individuals with kidney stones, and advocates for patients with a diverse array of kidney stone experiences. We are also researchers and clinicians who are dedicated to high-impact research in kidney stone disease.

Clinicians & Researchers

Jonathan
Katherine
Sam
Kristin
Kim
Hunter
Kate
Chris
Dirk
Greg
Necole
Anabelle
Carswell
Kristi

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KSEC Partners

Jon Ellison MD (KSEC Director): I am a pediatric urologist and kidney stone researcher at Children’s Wisconsin and the Medical College of Wisconsin. Although my clinical practice focuses on prevention and treatment of kidney stones in children, adolescents, and young adults, my research explores the impact of kidney stone disease across the lifespan of disease. Working with the Kidney Stone Engagement Core continuously reminds me of both the significant burden that kidney stones place on patients and their caregivers as well as the importance of listening to these burdens when considering important research for kidney stone disease. The collaborations and relationships that we’ve built within KSEC continue to inspire me with each subsequent project. When not caring for patients or working on research, I enjoy getting outside for a run or some time by Lake Michigan, spending time with my wife and two sons, or reading.    

Katherine Parker (KSEC Manager)

 I am the research coordinator, project and engagement manager for the Kidney Stone Engagement Core at the Medical College of Wisconsin and Children’s Wisconsin.  I have a degree in Neuroscience/ Psychology and have worked in research for 8 years with 4 years of clinical research in pediatric urology. Our team is dedicated to lessening the burden of kidney stones for patients and families by building partnerships with patients, caregivers, researchers and clinicians by developing research and clinical tools to improve their experience. Outside of my work, I am a martial artist, taekwondo instructor, amateur photographer, and mother.

 

Samantha Jacklin BS:
I am a research coordinator for Jonathan Ellison, the director of the KSEC. I am also an engagement manager for the Kidney Stone Engagement Core. We are dedicated to changing the burden of kidney stones for patients and caregivers while creating a relationship between caregivers, patients and clinicians. On weekends or after work hours, I spend a lot of time traveling, spending time outdoors and on the golf course with my husband and my two sons.  

Kristin Whitmore, New Jersey 

First kidney stone at age 17 (I think) 

No family history or other known factors which would contribute to stones 

  4 lithotripsies over the years *Scheduled for another the end of August  

  1 urertoscopy 

 

Kim Hollander, Executive Director, brings over two decades of experience in nonprofit leadership, with a deep focus on healthcare advocacy and community outreach. At The Oxalosis and Hyperoxaluria Foundation (OHF), Kim directs the strategic vision and operational management, steadfastly committed to ending hyperoxaluria, a rare and life-threatening kidney stone disease. Her unwavering dedication to patient advocacy and expertise in fostering collaborative partnerships have been instrumental in driving positive transformations within the healthcare sector. Notably, her close collaboration with the FDA and industry partners has resulted in the introduction of two life-saving treatments for the patients she serves. 
  
Beyond her role at OHF, Kim has served on the Board of Directors at the National Organization for Rare Disorders (NORD) and holds positions on various boards and committees, underscoring her commitment to fostering partnerships and driving impactful change in healthcare.   

Hunter Beck is a junior at West Chester University in Pennsylvania studying Public Health. He would like to focus on patient advocacy when he is done. His involvement with Pediatric Kidney Stone (PKiDS) Core Network since its inception in 2019 and Kidney Stone Engagement Core Introductory (KSEC) since 2021 have cemented his interest in advocating for patients. 

Kate Zellers is a parent/caregiver to a young child with the rare kidney stone producing disorder Cystinuria. Her involvement with the Kidney Stone Engagement Core (KSEC) began in 2024, and is centered on providing knowledge and guidance based on her experience advocating for her child’s medical needs, and managing the daily life of a stone producing child. Kate is fully committed to sharing her experiences and insights to improve collaborative communication and advocacy, and help advance the research improving the lives of children and families experiencing pediatric nephrolithiasis. 

Chris Zellers is the father of Alex, a young boy with cystinuria, a rare genetic disorder that causes stone formation due to excess cystine in the kidneys.  When Alex was three, two very large stones were discovered in his kidney and bladder, requiring surgery.  Alex’s care required the entire family to make many adjustments to keep him healthy, and there was a lot to learn to ensure his best chances of preventing further stones.  Fortunately, we had an excellent and informative medical team, who referred us to the Kidney Stone Engagement Core (KSEC).   

Chris looks forward to contributing to KSEC from the perspective of a caregiver.  Although his background is in ecology, he is currently a middle school science teacher, and understands the challenges of creating effective lines of communication with young people and their caregivers.   

Dr. Dirk Lange is an Associate Professor in the Department of Urologic Sciences at the University of British Columbia and the Director of Basic Science Research at The Stone Centre at Vancouver General Hospital (VGH). After completing his PhD in Microbiology & Immunology at the University of Western Ontario (London, Ontario, Canada), Dr. Lange joined The Stone Centre at VGH Hospital in 2008 as a post-doctoral fellow and transitioned into a full faculty position in the Department of Urologic Sciences in 2011.  

Dr. Lange has been instrumental in building an internationally renowned translational research and training program at The Stone Centre at VGH, dedicated to the development of novel treatment options for recurrent kidney stone disease. He is viewed as one of the leading experts in understanding mechanisms behind indwelling ureteral stent-associated complications including infections and the ureteral response to indwelling stents and how this translates to patient discomfort. Given Dr. Lange’s expertise in Microbiology, his research program is also expanding our understanding of the roles of the intestinal and urinary microbiota in the development and treatment of urologic disease including recurrent kidney stone disease, kidney transplant rejection and bladder cancer.  

Overall, Dr. Lange brings a new perspective on various aspects of urological research, resulting in the development of new and innovative research leading to novel treatment and preventative options. 

Gregory Tasian MD, MSc, MSCE 

Dr. Tasian a tenured Associate Professor of Surgery and Epidemiology at the University of Pennsylvania Perelman School of Medicine. His research program is based at the Children’s Hospital of Philadelphia (CHOP), where he is a practicing pediatric urologist specializing in the surgical and medical management of children with kidney stone disease. He completed his Urology residency at UCSF and pediatric urology fellowship at CHOP. Dr. Tasian earned Masters of Science degrees in neuroscience (Oxford) and clinical epidemiology (Penn). He is the Director of the 30-site PCORI- and NIH-funded Pediatric KIDney Stone (PKIDS) Care Improvement Network and leads CHOP’s Center for Outcomes REsearch in Surgery (CORES). His research group uses a combination of randomized trials, prospective observational studies, and large data analytics to generate knowledge that improves outcomes for individuals with kidney stone disease across the lifespan. His research program has been continuously supported by the NIH and PCORI since he finished fellowship and he has published over 150 research articles in leading peer-reviewed journals. His research has been covered extensively in the press, including The New York Times, ABC News, The Guardian, and CNN. 

He is most passionate about applying research to improve the health of children.  

Necole Streeper, MD is an Associate Professor of Urology in the Department of Urology at Medical College of Wisconsin. She completed medical school at the University of Iowa Carver College of Medicine followed by a residency in Urology at University of Texas Health Science Center at San Antonio. She also completed a fellowship in Endourology and Minimally Invasive Surgery at the University of Wisconsin. Dr. Streeper specializes in surgically treating complex kidney stone disease. In addition, she is the director of a multidisciplinary kidney stone prevention clinic that focuses on the prevention of kidney stones through both medical and dietary therapy.

 

Her clinical research is dedicated to improving the prevention, treatment and detection of kidney stones. Specifically, she has received NIH grant support to develop technology to improve fluid consumption for the prevention of kidney stones. In addition, she is also interested in identifying management strategies to improve the quality of life in patients with kidney stones.  She is the lead investigator for MCW as a research site in the North American Stone Quality of Life Consortium, which is a nationally recognized research group. Dr. Streeper has authored several research publications and book chapters in the field of kidney stone disease.

As a kidney stone patient since age 15, I have self-advocated through various challenges, which motivated my educational endeavors in the study of health literacy. Joining KSEC at the beginning of 2024 deepened my commitment to empowering others through effective communication and advocacy. 

Carswell Ouimet (They/He) is a 21 year old college student who hopes to pursue a career in the film industry.  Carswell suffered their first kidney stone when they were just 3 years old.  They were initially dismissed and misdiagnosed by their medical team and did not receive the proper diagnoses of Primary Hyperoxaluria Type 1 (PH1) until they were 6 years old.  Little was known of this disease other then it could cause kidney failure and require a combined kidney liver transplant.  Carswell experienced countless kidney stones over the years and went into kidney failure at 17 years old needing hemodialysis six days a week. They were able to get access to a new medication to treat PH1 and was the first patient to receive a kidney only transplant when they were 19 years old.  

  

Carswell has shared their experiences to help advocate for others.  Carswell joined the Kidney Stone Engagement Core (KSEC) to offer their insight in hopes to educate the professionals and potentially change the way patients are treated with chronic kidney stones.  Carswell belongs to several advocacy groups as a young ambassador and hopes to continue raising awareness for those in need.  

Kristi Ouimet is mom to three, stop mom to four and memaw to five.  For the last 20 years she has been primary caregiver for two of her children that were born with a rare, life threatening genetic disease called Primary Hyperoxaluria Type 1.  She discovered early on how important it was to advocate for her children to get the care required to treat their disease.  This disease (like many) present different with each patient, but it can be fatal if not treated.  Both of Kristi’s PH children have had kidney stones which lead to kidney failure requiring years of hemodialysis and transplants.   

  

Kristi struggled with feeling helpless as her children suffered through complications from this disease.  Her oldest child was passing painful kidney stones at just 3 years old and her youngest child went into kidney failure at 5 months old.  While they traveled 90 miles everyday for hours of hemodialysis treatment, Kristi found new hope with connections made through advocacy. Kristi has networked and connected with hundreds of patients, medical professionals, legislative representatives and organizations all over the world with the primary focus of helping patients get access to care. Kristi and her family have dedicated their lives to advocacy and share their story in hopes to raise awareness, educate others and offer hope to those who suffer. 

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