Mary Chapman, features writer —

Mary graduated from Wayne State University with a degree in journalism. She began her career at United Press International, then spent a decade reporting for the Bureau of National Affairs, Inc. (now Bloomberg Industry Group). Mary has written extensively for The New York Times, and her work has appeared in publications such as Time, Newsweek, Fortune, and the Chicago Tribune. She’s won a Society of Professional Journalists award for outstanding reporting.

Articles by Mary Chapman

Supporters Set to Mark International Batten Disease Awareness Day

From participating in a virtual 5k to sharing personal stories, supporters are set to mark International Batten Disease Awareness Day, observed annually on June 9. The goal of the global event is to raise awareness among the general public as well as legislators, industry representatives, public authorities, researchers, and healthcare…

BDSRA Webinar Focuses on Latest Treatments, Research

The Batten Disease Support and Research Association (BDSRA) will present a special international edition of its virtual Ask-An-Expert series today. The webinar will explore the latest in treatment development for this group of rare inherited neurological conditions, with an emphasis on gene therapy. The free interactive event, “Let’s Have…

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

International Batten Disease Awareness Day is June 9

From participating in a virtual 5K to sharing family stories and videos, supporters are gearing up for International Batten Disease Awareness Day on June 9. The goal is to heighten awareness among the general public as well as  lawmakers, public authorities, industry representatives, scientists, and health professionals. Awareness and education…

Neurogene Workshop Seeks Families Affected by CLN5

Editor’s note: This story was updated March 30, 2021 to clarify that Neurogene is hosting videoconferences workshops for families in any country. Neurogene, which is developing treatments for Batten disease and other rare neurological disorders, is inviting families affected by CLN5, a form of late infantile…