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

Myaware offering Aug. 9 online support meeting for LEMS patients

The U.K.-based myasthenia patient organization Myaware will host an online support meeting on Aug. 9 for individuals living with Lambert-Eaton myasthenic syndrome (LEMS). The 1.5-hour Zoom meeting is specifically for members of Myaware, the only nonprofit in the U.K. representing people with myasthenia, a group of neuromuscular…

Most public health plans in Canada now cover Ruzurgi for LEMS

Months after a Federal Court of Appeal of Canada decision restored the availability of the Lambert-Eaton myasthenic syndrome (LEMS) treatment Ruzurgi (amifampridine) in that country, the therapy is now covered by most provincial and federal public health programs and by many private insurance plans through special authorization. Overall, coverage…

Delaware’s bill passage for rare disease advisory council applauded

Delaware’s lieutenant governor, Bethany Hall-Long, PhD, is applauding the passage in the state House of Representatives of a measure that would create the state’s first Rare Disease Advisory Council (RDAC). The legislation would establish an advisory body for state residents who have a rare disease, such as Lambert-Eaton myasthenic…

Twins outfielder is stepping up to the plate for LEMS, rare diseases

Minnesota Twins outfielder Michael A. Taylor is stepping up to the plate on behalf of people with rare diseases like Lambert-Eaton myasthenic syndrome (LEMS). The home run challenge, which seeks to raise more than $150,000 for the rare disease community, will support the nonprofit organization Uplifting Athletes, which…

NORD selects 4 organizations to join its IAMRARE platform

The National Organization for Rare Disorders (NORD) has selected four patient advocacy organizations to join its IAMRARE platform and host patient registries for rare disorders. The goal is to enhance the platform’s volume of patient-reported data, which could result in new therapies and improved care for those with rare…

Ruzurgi for Children and Adults With LEMS Returning to Canada

A decision by the Federal Court of Appeal of Canada is restoring the availability of Ruzurgi (amifampridine) to treat children and adults with Lambert-Eaton Myasthenic Syndrome (LEMS) in that country, Medunik Canada announced. Specifically, the court returned for a second time the notice of compliance, or approval, …

NORD Applauds New US Legislation for Rare Disease Funding

While unhappy with shortcomings in the legislation, the National Organization for Rare Disorders (NORD) nonetheless is applauding a year-end U.S. spending package that included several programs and reforms crucial to those with rare diseases, including Lambert-Eaton myasthenic syndrome (LEMS). As part of an expansive $1.7 trillion package, signed…

NORD Hopes to Add 4 Patient Registries to IAMRARE Platform

The National Organization for Rare Disorders (NORD) is requesting applications from patient advocacy organizations to host new or existing patient registries for rare disorders, such as Lambert-Eaton myasthenic syndrome, on its IAMRARE platform. To expand its collection of patient-reported data, which could lead to new treatments and…

NORD, Others Urge Congress to Fully Fund FDA Rare Disease Programs

The National Organization for Rare Disorders (NORD) is leading an effort by organizations representing or treating people with rare diseases, all calling on federal lawmakers to include key U.S. Food and Drug Administration (FDA) programs and reforms in a year-end spending bill. A letter written by NORD and signed by 126…