Providing education, support, advocacy, and promoting research
for CTX patients, their families, and medical professionals
who treat and study this rare disease.
Bobbi Blanchard (Co-President)
New Richmond, Wisconsin
Bobbi lives with her husband, Tim, and three children, Jordan, Joelle and Jace. She works as the Director of Children’s Ministry in their local church, home schools her children and enjoys both reading and creative writing. When two of their children were diagnosed with CTX several years ago, the Blanchard’s were incredibly grateful to have received a diagnosis and treatment early enough to impact their kids’ health. The entire Blanchard family is committed to helping locate and support current and future CTX families
George Bryce (Co-President)
Waxhaw, North Carolina
George is the owner of Crown Pest Control in Charlotte, NC. He has been affected with CTX since age 34 and enjoys traveling, the outdoors and being with his family. He and his wife have four children and are expecting their first grandchild soon. George has been on Chenodal from the very beginning of his diagnosis but feels his gait in his walk is deteriorating over time.
Abbey R. Cook
While raising her three children with her husband, David, Abbey founded a confectionary company, volunteered in her children’s schools, and worked with refugees and immigrants. The discovery of her family’s CTX has galvanized Abbey to join efforts to establish newborn screening, raise awareness of symptoms among health care providers, and support families facing CTX and other leukodystrophies. Abbey is a lifelong student of languages, environmental sciences and now CTX. She has an A.B. from Harvard University in the American Urban Environment.
Andrea E. DeBarber, PhD (Co-Vice President)
Portland, Oregon
Dr. Andrea DeBarber is a Research Associate Professor at Oregon Health & Science University (OHSU), Portland OR, where she oversees the OHSU Sterol Analysis Laboratory that performs blood and urine testing for diagnosis and therapeutic monitoring of CTX. A focus of Dr. DeBarber’s research has been on developing improved diagnostic and screening tests for CTX.
Shawn Laurie, Treasurer
Mansfield, Texas
Shawn Laurie is a CPA living in Mansfield, Texas with her husband, James who is a CTX patient. She works in Financial Reporting at a private company in Dallas, Texas where she has been for 15 years. Her husband, James was diagnosed with CTX at 32 years old. Shawn has a passion for advocating for CTX patients, educating medical personnel about CTX, and supporting the caregivers of those affected with this disabling disease.In her spare time, Shawn loves to spend time with her family (especially the grandchildren) and quilting.
Neel Odedara, Secretary
Covington, Virginia
Neel is a life sciences industry consultant specializing in advising global biopharmaceutical clients on commercial strategy across a wide range of therapeutic areas including rare/orphan diseases, neurology, and cardiometabolic conditions. Neel’s older sister Sangna was diagnosed with CTX at 34 years old, after decades of missed symptoms and misdiagnoses.
Hollisa Rosengrant
Chicago, Illinois
Hollisa is a CTX patient, who currently is a stay-at-home mother to her 4-year-old daughter, which keeps her busy. Prior to staying home, Hollisa worked as a project assistant at an engineering firm for 15 years. Hollisa volunteers for the Chicago Windy City Lions Club and sings karaoke whenever she has the chance.
Jennifer Rossen, MD
Dr. Rossen is a pediatric ophthalmologist and surgeon at Lurie Children’s. She has expertise in treating a wide range of pediatric ophthalmologic conditions, especially eye muscle disorders. She also studies pediatric ophthalmology conditions including eye muscle disorders and has authored several scientific publications. In clinic, Dr. Rossen’s goal is to provide compassionate patient-centered care and to engage families in understanding each child’s eye conditions and treatments. One of Dr. Rossen’s clinical interests is pediatric cataracts, and she is co-chairing a ClinGen project to identify causal genes and the development of formal disease-gene rule for pediatric cataracts.
Robert D. Steiner, MD (Co-Vice President)
Marshfield, Wisconsin
Dr. Steiner is a Professor of Pediatrics (Clinical) at the University of Wisconsin, Chief Medical Officer at Prevention Genetics, and Newborn Screening Program Medical Consultant for the Wisconsin Department of Health Services. Dr. Steiner is board certified in Pediatrics, Clinical Genetics, and Clinical Biochemical Genetics and serves as the Editor in Chief of Genetics in Medicine. Dr. Steiner is an active clinician-scientist with specific interests in inherited metabolic diseases, metabolic bone diseases, disorders of sterol and bile acid synthesis, genetic testing, and newborn screening. In addition, Dr. Steiner is an accomplished researcher, having served as the Principal Investigator for more than a dozen clinical trials and research studies on rare diseases, including Cerebrotendinous Xanthomatosis (CTX), Smith-Lemli-Opitz Syndrome (SLOS), Osteogenesis Imperfecta, Phenylketonuria, Lysosomal Storage Diseases, and others. Dr. Steiner has cared for CTX patients and been involved with CTX research for over two decades.
John Wolf
Portland, Oregon
John works in IT and engineering in the banking industry in Portland, Oregon. His daughter, Ashley, was diagnosed with cerebrotendinous xanthomatosis (CTX) in 2004. In addition to serving on the CTXA board, John has been a member of the ULF Board of Directors since 2007, serving as a CTX patient liaison and managing the CTX Facebook group. John is a long-time advocate in bringing attention to the need for newborn screenings and newly developed tests to the recommended uniform screening panel (RUSP) as well as efforts to determine CTX disease prevalence. John enjoys spending time with his first grandchild, going to comedy shows and concerts.