Exciting News! We are thrilled to unveil the exceptional team of experts who will be leading the way in our Aicardi-Goutieres Syndrome ECHO (Extension for Community Healthcare Outcomes) program. Together, they bring a wealth of knowledge and experience to this groundbreaking initiative, dedicated to improving the lives of individuals affected by AGS and advancing healthcare.

Meet Our Esteemed Faculty:

Min Ae Lee-Kirsch, MD

Dr. Lee-Kirsch, a clinical geneticist, leads a research group at the Technische Universität Dresden that specializes in investigating the molecular mechanisms behind autoinflammation and autoimmunity. Her research particularly focuses on perturbations of the type I interferon (IFN) axis, which includes conditions like AGS. Additionally, Dr. Lee-Kirsch provides clinical care and treatment to AGS patients, combining her expertise in research and patient care for a comprehensive approach to the disease.

Stephen Wong, MD

Dr. Wong, a pediatric rheumatologist at Seattle Children's Hospital, specializes in treating inflammatory brain disorders like AGS. He brings extensive expertise to the care of multiple AGS patients at Seattle Children's Inflammatory Brain Disorders Clinic, providing essential support and treatment for those in need. Dr. Wong's dedication and qualifications make him a trusted resource for this specialized field of pediatric medicine.

Laura Adang, MD, PhD, MSTR

Dr, Adang, an attending physician in the Division of Neurology at Children's Hospital of Philadelphia (CHOP), specializes in the comprehensive care of children diagnosed with leukodystrophies. Her regular leadership in managing AGS patients underscores her commitment to providing the highest level of medical care in this field. Dr. Adang's expertise is a valuable resource for AGS patients and their families seeking expert guidance and treatment.

Davide Tonduti, MD, PhD

Dr. Tonduti, the founder and medical coordinator of COALA (Center for Diagnosis and Treatment of Leukodystrophies and Genetic Leukoencephalopathies), is an expert in the field of leukodystrophy treatment. Notably, he also serves as a principal investigator in an AGS clinical trial, demonstrating his commitment to advancing research and improving the lives of individuals affected by this condition. His multifaceted role ensures comprehensive care and cutting-edge treatment options for patients.

Nicole Jaffe, MD

As a complex care pediatrician at the Children’s Hospital of Philadelphia’s (CHOP) Leukodystrophy Center, Dr. Jaffe treats many children with AGS. Her approach is rooted in providing comprehensive and holistic care, prioritizing each child's ability to thrive and excel, irrespective of their condition. Dr. Jaffe's dedication ensures that AGS patients receive the support they need to lead fulfilling lives.

Our faculty members are committed to empowering healthcare professionals to enhance the care and quality of life for those affected by AGS. Together, we can make a difference!

Stay tuned for updates, schedules, and valuable resources coming your way in 2024. We're excited to embark on this journey of knowledge sharing and collaboration together. 💪