Author Archives: Mary Chapman

Doddie Foundation Gives £300,000 to Help MND Patients in UK

The My Name’5 Doddie Foundation has donated a total of £300,000 (about $420,600) to two U.K. nonprofits to support people living with motor neuron diseases (MND), including amyotrophic lateral sclerosis (ALS). The foundation, established by the former Scottish rugby player George Wilson “Doddie” Weir, gave £200,000 to the…

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

ALS Association Moving to Press for ALS Research Money from Congress

As a new U.S. Congress prepares to start the annual process of determining funding for federal programs, the ALS Association is asking its advocacy network to press their legislators to expand support for research in amyotrophic lateral sclerosis (ALS). “This year, the ALS Association will aggressively pursue new and…

NORD’s Caregiver Respite Program Continues Through Pandemic

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

Indiana Offering Specialty License Plate to Support ALS Research

Indiana motorists can now sport a specialty license plate on their vehicles to show their support for amyotrophic lateral sclerosis (ALS), while contributing to the work into this neurodegenerative disease underway at the ALS Therapy Development Institute (ALS TDI). Proceeds from plate purchases will go to support studies taking place at…