About Us
The Alagille Syndrome Alliance (ALGSA) is the leading 501c3 patient advocacy organization in the world serving families affected by Alagille Syndrome, a rare cholestatic liver disease and one of over 7,000 rare diseases in the world.
The ALGSA staff and board is made up of professionals in the ALGS community including patients, caregivers, and friends all deeply understanding of the complex and difficult nature of ALGS.
MISSION STATEMENT Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.
VISION ALGS Warriors thrive in a close-knit community full of loving support, easily accessible resources, and life affirming hope.
GOALS
- Support the ALGS community by continuing our innovative efforts that emphasize education, opportunities to connect, access to resources, and individual support.
- Build capacity to increase engagement in advocacy and research, helping support development of therapies that benefit ALGS Warriors around the globe.
- Engage medical professionals to broaden knowledge of ALGS, develop guidelines for care, communicate with practitioners, and inform medical students through ALGS education.
- Offer a symposium every three years for families to access resources that meet their needs and help them thrive.
- Levereage staff resources and external relationships to stay financially healthy and sustainable.
- Implement an operational model that allows for growth and continues to encourage flexibility and responsiveness to the needs of our community.
Founder
Cindy Luxhoj
ALGSA Leadership, Staff, and Consultants

Roberta Smith

Cher Bork

Stephanie Mullett
Program Administrator

Karsten Baumgaertel
Scientific Research Coordinator

Erin
Lorem Ipsum
Board of Directors

Sean Kelley
Chairman

Julia Bird
Vice Chair

Todd Allen
Treasurer

Shambhavi Ravishankar
Secretary

Mike LaRosa
Treasurer
Honorary Emeritus Board Member

Alaina Hahn
Honorary Board Member
ALGSAdvisory Council

David Piccoli
David A. Piccoli, MD is a world-leading expert in Alagille Syndrome and a nationally renowned pediatric gastroenterologist with the Division of Gastroenterology, Hepatology and Nutrition at Children’s Hospital of Philadelphia. Internationally respected for his compassionate, individualized approach to care, Dr. Piccoli has treated and advised children with complex liver and gastrointestinal disorders from around the world and is frequently sought for expert consultation and second opinions. His work has consistently reflected a commitment to integrating emerging science and innovation to improve outcomes for children with rare and chronic diseases, particularly Alagille Syndrome.
Dr. Piccoli received his undergraduate degree from Johns Hopkins University and his medical degree from Harvard Medical School, followed by residency training in Boston and fellowship training at CHOP, where he has served on faculty since 1985. During his tenure as Division Chief, he led a period of remarkable growth, expanding multidisciplinary clinical care, advancing research programs, and mentoring more than 100 fellows who now serve patients worldwide. A prolific investigator and educator, Dr. Piccoli was part of the multidisciplinary team that identified JAG 1 and NOTCH2 genes as the genetic causes of Alagille Syndrome and has continued to help advance the field. He has authored more than 90 peer-reviewed publications, numerous book chapters, and hundreds of scientific presentations. In recognition of his lasting impact, the David A. Piccoli, MD Endowed Chair in Gastroenterology was established at CHOP in his honor. He received the ALGS Champion Award from the Alagille Syndrome Alliance in 2019 for his extraordinary contributions to the Alagille community.

Binita Kamath
Dr. Kamath was educated at the University of Cambridge and trained at leading London hospitals, including King’s College Hospital, before completing her fellowship in Gastroenterology, Hepatology and Nutrition at CHOP. She joined the CHOP faculty in 2006, later moving to The Hospital for Sick Children in Toronto, where she served as a Hepatologist, Clinician-Investigator, Fellowship Program Director, Senior Associate Scientist, and ultimately Interim Division Head from 2022–2024. In 2024, she returned to CHOP as Division Chief. Dr. Kamath is the founder of the GALA study, the largest global research database for Alagille syndrome, encompassing more than 1,700 patients from 90 centers in 35 countries. Her research also includes stem-cell-based disease modeling and pioneering work on frailty and sarcopenia in children with liver disease. A prolific author with more than 130 peer-reviewed publications, she serves as an Associate Editor of Hepatology and has held leadership roles across major international societies. In recognition of her profound impact on the Alagille community, she has received the ALGS Champion Award from the Alagille Syndrome Alliance, among numerous other honors.

Ruben Quiros
Dr. Ruben Quiros Tejeira is a distinguished medical professional specializing in pediatric gastroenterology, hepatology, and nutrition. He accepted his current appointment as the Chief of the Division of Gastroenterology, Hepatology, and Nutrition at the University of Nebraska Medical Center (UNMC) and Children’s Nebraska 16 years ago. Additionally, he holds the position of Professor of Pediatrics and Surgery at UNMC, Vice-Chair for Faculty Affairs in the Department of Pediatrics and Medical Director for the Pediatric Intestinal Rehabilitation & Transplantation programs at the Lied Transplant Center, as well as the Medical Director for Bariatric Surgery.
Dr. Quiros Tejeira’s extensive experience includes a medical degree from Universidad Nacional de Panama, residencies at Children’s Hospital of Panama and Thomas Jefferson University, and fellowships in Gastroenterology and Advanced Clinical Gastroenterology at UCLA. His clinical and research interests are centered around pediatric liver and intestinal transplantation, short bowel syndrome, intestinal failure, and various pediatric liver diseases. Known for his dedication to patients and teaching, Dr. Quiros is actively involved in numerous committees and has received recognition for his contributions to the field.
Dr. Quiros Tejeira has a passion for academics, as evidenced by being the Program Director for both Pediatric Gastroenterology and Pediatric Transplant Hepatology Fellowship programs.
When he is not working, Dr Quiros Tejeira enjoys traveling with his wife, Nubia, often visiting one of his three sons who is a musician in Nashville and another who is in pre-med in Saint Louis. He also enjoys hiking with his older son who lives in Omaha. He loves going back to Panama to visit old friends and family whenever his schedule allows. He is also a talented musician and serves his church and community faithfully. He has supported the Alagille Syndrome Alliance for more than 2 decades and has witnessed its growth.

Jeffrey Feinstein
Dr. Jeffrey A. Feinstein is the Dunlevie Family Professor of Pulmonary Vascular Disease and a Professor of Pediatrics (Cardiology) at Stanford University Medical Center, with a courtesy appointment in Bioengineering. He serves as the Director of the Vera Moulton Wall Center for Pulmonary Vascular Disease and the Medical Director of the Pediatric Pulmonary Hypertension Program at Lucile Packard Children’s Hospital at Stanford. His clinical focus encompasses pediatric cardiology, pulmonary hypertension/pulmonary vascular disease, congenital heart defects, and related conditions such as Alagille Syndrome.
Previously, Dr. Feinstein has held positions including Associate Chair for Education in the Department of Pediatrics and Director of the Pediatric Cardiology Training Program. His research interests center on computer simulation and modeling of cardiovascular physiology, evaluation and treatment of pulmonary hypertension, and the development of medical devices and therapies for congenital heart and pulmonary vascular diseases. He is also actively involved in numerous boards, advisory committees, and professional organizations, and is a co-founder of Gradient Denervation Technologies.
Outside of his professional interests, Jeff enjoys cycling, golf, travel, doing volunteer work, and spending time with his wife and sheepadoodle (and kids when they have time for him).

Richard Pencek
Rich is a senior director of clinical development at Pliant Therapeutics, Inc. He received a PhD in liver physiology from Vanderbilt University and has over 18 years of experience focused on the clinical development of novel therapeutics for the treatment of metabolic and rare liver disease with an expertise in Phase 2-4 clinical trial development and execution. Outside of science, Rich enjoys photography, hiking and cooking for friends and family.

Pamela Stephenson
Pamela Stephenson is a strategic life sciences executive and board director with a proven track record of guiding R&D-stage biotechs to their first commercial launches. Pamela currently serves as Chief Commercial Officer for Disc Medicine, a biopharmaceutical company dedicated to transforming the lives of patients with hematologic disorders. Pamela previously was Chief Commercial Officer at Albireo Pharma, where she spearheaded a commercial strategy that launched Bylvay (odevixibat) in the US and Europe. Earlier, Pamela held a series of critical roles at Vertex Pharmaceuticals, where she launched the company’s first commercial product, Incivek for hepatitis C, and later held leadership roles in cystic fibrosis sales, marketing, and global market access.
Pamela began her career in the US Peace Corps as a maternal and child health volunteer in Morocco. She later had multiple marketing roles at Pfizer, ultimately leading Viagra marketing in the US. Pamela also served as a Board Member of Zynerba Pharmaceuticals, a biotech company specializing in rare neuropsychiatric conditions.
Pamela earned an MPH from Boston University and a BA in Biology from Brown University. Pamela and her husband Bryan enjoy traveling, skiing, spending time with their daughter and son, and walking their dogs in the Boston area.

Steve Rodems
Steve is a cell biologist and drug developer who has been working in the rare disease space for over 25 years. He hails from Southern California, received his Ph.D. from University of Wisconsin- Madison (Go Bucky!), and headed right back to San Diego after too many Midwest winters! Steve has been at Travere Therapeutics for 10 years focusing on kidney, metabolic, and liver diseases including Alagille Syndrome. Prior to Travere, Steve spent 15 years at Vertex Pharmaceuticals working on a variety of rare, genetic disorders. He has been a champion of incorporating the patient voice as early as possible in the drug development process exemplified by Travere’s 3-way research collaboration with the ALGSA and NCATS to discover drugs for Alagille Syndrome. He enjoys wearing a patient advocacy hat and contributing to advancements aimed at changing the game for rare diseases such as how we collect patient data and modernizing newborn screening. In his spare time, Steve enjoys spending time with his kids and grandkids, playing softball, and rooting on his favorite sports teams (Go Badgers and Padres!).

Andrew E. Mulberg
Andrew is currently an Executive pharmaceutical leader leading strategy and operational aspects of drug and biological development for NDA and BLA submissions for pediatric and adult rare diseases, cystic fibrosis, gastroenterology and hepatology. He is currently Senior Vice President, Regulatory Affairs, Quality Assurance and Quality Control at Neurogene Inc, a company devoted to gene therapy approaches to management of neurodegenerative and neurodevelopmental disorders in children and adults including Rett syndrome. Formerly, he served Senior Vice President, Global Regulatory Affairs at Amicus Therapeutics from 2016-2020 and responsible for the approval of Galafold (migalastat) for the treatment of Fabry disease in adults. He has been involved in the registration planning for AT-GAA, a novel enzyme replacement therapy for Pompe disease in infants, children and adults. He served as Division Deputy Director of Gastroenterology and Inborn Errors Products, Center for Drug Evaluation and Research (CDER), U.S. Food and Drug Administration (FDA) since 2010-2016. Before joining FDA, Andrew was Portfolio Leader in Established Products responsible for worldwide leadership of Internal Medicine products in Johnson and Johnson from 2000-2010. Andrew is a graduate of Columbia College of Columbia University and of the Mount Sinai School of Medicine. He completed his residency in Pediatrics at the Children’s Hospital of Philadelphia followed by a Pediatric Gastroenterology Clinical Fellowship and a Post-Doctoral Fellowship in Cellular and Molecular Physiology at New England Medical Center. Andrew is Adjunct Professor of Pediatrics at the University of Maryland School of Medicine and has served as Attending, Pediatric Gastroenterology and Nutrition at Cooper University Hospital in New Jersey caring for children with gastrointestinal diseases. He is Principal Editor of Pediatric Drug Development: Concepts and Applications published in 2011 and 2013. He is a member of Alpha Omega Alpha Honor Medical Society, American Gastroenterological Association and the North American Society for Pediatric Gastroenterology and Nutrition.

Dennis Black
Dennis Black, MD, is the James Dustin Buckman Professor of Pediatrics and Professor of Physiology at the University of Tennessee Health Science Center (UTHSC) in Memphis. Dr. Black serves as Scientific Director of the Children’s Foundation Research Institute of Memphis, as well as Vice President for Research for Le Bonheur Children’s Hospital (LBCH) and Vice Chair for Research for the Department of Pediatrics.
A native of the Memphis area, Dr. Black graduated from the University of Memphis and UTHSC. He completed his pediatric training and fellowship in Pediatric Gastroenterology, Hepatology and Nutrition at UTHSC and LBCH. His research and clinical interests are neonatal lipid absorption and metabolism and associated disorders, as well as pediatric liver disease and transplantation with a focus on pediatric primary sclerosing cholangitis (PSC) and other cholestatic liver diseases.
Dr. Black has received research funding from the National Institutes of Health (NIH) and the Food and Drug Administration, among others, and has authored more than 170 journal articles, book chapters, and abstracts. He has mentored numerous fellows, medical students, graduate students, postdoctoral fellows, and junior faculty. He has also served as chair and member of several national grant review committees, including those for NIH, American Liver Foundation, North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN), and American Heart Association. He served as a member of the editorial board of the American Journal of Physiology: GI and Liver Physiology from 2003-09 and has served on the executive councils of the Society for Pediatric Research and NASPGHAN. He was Vice Chair and Chair of the American Gastroenterological Association Council Section on Obesity, Metabolism and Nutrition from 2013-18 and was recipient of the Section’s Research Mentor of the Year Award in 2020.
Dr. Black received the UTHSC Outstanding Alumnus Award in 2017 and the Department of Pediatrics 2017 Outstanding Mentor Award. In 2018, he was awarded the NASPGHAN Gerard Odell Prize for Excellence in Hepatology Research. Dr. Black is a member of the scientific advisory boards of PSC Partners Seeking a Cure and the Alagille Syndrome Alliance and is a founding board member and President of the Abetalipoproteinemia and Related Disorders Foundation.
Dr. Black is married to Dr. Gail Beeman, also a pediatrician, whom he met while both were pediatric residents at LBCH in Memphis. They have three children, two dogs, and one cat. Dr. Black is co-owner of Black and Wyatt Records, a vinyl-only record company specializing in Memphis rock ’n’

Richard Thompson

Benjamin Forred
Ben has worked in the field of biomedical research since 2009. His experience ranges from nearly a decade working at the bench in basic science, to five years working in the clinical research space. Currently, Ben is responsible for translational research projects at Sanford Research. His team maintains a colony of transgenic mice and a vast number of patient and rodent cell lines that model a number of rare disorders. His group then partners with for-profit biopharma companies to screen promising therapeutics. Additionally, Ben and his team assist basic scientists with human subject research projects and coordinate clinical sample collection. Ben has also been responsible for the growth of the CoRDS Registry since 2016. CoRDS is an international, disease agnostic, rare disease registry offered at no cost to people living with rare conditions or to the researchers investigating rare disease. Through this endeavor, Ben has built strong relationships with a number of advocacy organizations, and he constantly works to put the wellbeing of rare patients at the forefront of all phases of his career. Outside of work, Ben is an avid woodworker, musician, husband, and father to four wonderful children.

Emma Andersson

Nancy Spinner
For more than three decades, Dr. Spinner’s research has focused on identifying disease-causing genes and understanding how genetic variation drives clinical diversity in pediatric disease. She was part of the multidisciplinary team that identified JAG 1 and NOTCH2 as the genetic causes of Alagille Syndrome and has since played a central role in defining its clinical spectrum, elucidating genotype-phenotype relationships, and identifying genetic modifiers of disease severity. Her work has also significantly advanced understanding of biliary atresia through genome-wide association studies and next-generation sequencing, as well as rare chromosomal disorders such as Ring Chromosome 14 and 20 syndromes associated with seizure disorders. A national leader in genomic medicine, Dr. Spinner has contributed to major collaborative research networks and helped establish best practices for pediatric exome and genome sequencing. In recognition of her transformative contributions to the Alagille community, she received the ALGS Champion Award from the Alagille Syndrome Alliance in 2019.

Kathleen M. Loomes
Dr. Loomes’ research focuses on the genetics of liver and bile duct development, with particular emphasis on the Notch signaling pathway following the identification of JAG1 as a causative gene for Alagille syndrome. Since beginning her work in this field in 1997, she has led foundational basic, translational, and clinical research using innovative mouse models and cell-based systems to elucidate the molecular mechanisms underlying bile duct formation and differentiation. Her work has also expanded to include bone development and fracture vulnerability in individuals with Alagille syndrome, addressing an important and under-recognized aspect of the condition. Dr. Loomes is an active member of the ALGSA Scientific Research Network and serves on the Bone–Muscle–Tooth Research Focus Group, helping to guide patient-centered research priorities in this critical area. In recognition of her enduring scientific contributions and commitment to the ALGS community, she received the ALGS Champion Award from the Alagille Syndrome Alliancein 2019.

Henry Lin

Ronald Sokol

Philip Rosenthal
Dr Rosenthal is the Professor in Residence, Emeritus Recall, Director of Pediatric Clinical Research and Director of Pediatric Hepatology at UCSF. I have research expertise in pediatric liver disease, obesity and nonalcoholic fatty liver disease, hepatitis B, hepatitis C, alpha-1-antitrypsin deficiency, acute liver failure, biliary atresia, neonatal hepatitis, Alagille syndrome, cholestasis, and pediatric liver transplantation. I have extensive experience as a principal investigator in NIH-funded multicenter longitudinal cohort studies and trials at UCSF with consistently successful enrollment and productive participation in these studies. My research for the past 30 years has focused on pediatric liver disease including the diagnosis, management, and treatment of these disorders.


