Children’s Hospital of Philadelphia Names Dr. Amy Waldman Endowed Chair in Alexander Disease Research
On behalf of Children’s Hospital of Philadephia:
Funded by Elise’s Corner and Jim and Marguerite Pearson, the role will help advance critical discoveries around treatment for the rare genetic disorder
Children’s Hospital of Philadelphia (CHOP) today announced the establishment of the Elise’s Corner Endowed Chair in Alexander Disease Research. Dr. Amy T. Waldman, Medical Director of the Leukodystrophy Center and a pediatric neurologist at CHOP, has been named the inaugural chair holder. Funded by Elise’s Corner and Jim and Marguerite Pearson, the role will support research and treatments for Alexander disease, a form of leukodystrophy that progressively damages the nervous system.
Jenny Pearson and Chris Bonsky are the founders and directors of Elise’s Corner, a foundation they started in honor of their teenage daughter, Elise, who lives with Alexander disease. Elise’s grandparents, Jim and Marguerite, are also committed supporters of finding better treatments for the disease. The family travels from Ohio to Philadelphia for Elise to receive treatment with Dr. Waldman, one of the world’s leading experts in Alexander disease.
“Elise was diagnosed with Alexander disease when she was three and Dr. Waldman has been with us every step of the way—managing her symptoms so she can have a better life,” Jenny Pearson said. “We are so grateful for her compassionate and expert care. Our wish is that this gift will bring hope to all families with loved ones experiencing Alexander disease as Dr. Waldman’s critical research brings us closer to more effective treatments.”
With the endowed chair support, Dr. Waldman and her team will advance research on understanding the progress of Alexander disease, establish clinical baselines for the disease over time, identify biomarkers that show disease activity or progression and connect patients worldwide to foster better support, diagnosis and awareness.
“It has been, and continues to be, such a privilege to treat Elise and get to know her family. I am deeply honored to be the inaugural chairholder,” Dr. Waldman said. “Their generous support will have an immeasurable impact on accelerating crucial research to not only enrich our current work, but also to ensure there is sustained funding in place for generations of continued discovery.”
Endowments at CHOP provide guaranteed funding for a wide array of essential work, from specific areas of research to vital patient care and social, emotional and financial support for families in need.
To learn more about the rare genetic disorder and the work CHOP is doing to help children and their families, visit https://www.chop.edu/conditions-diseases/alexander-disease.
