Biopharmaceutical Company Submits SMA-Targeted Apitegromab for FDA Biologics License Scholar Rock, a Cambridge, Massachusetts-based late-stage biopharmaceutical company, has submitted a Biologics License Application to the U.S. Food & Drug Administration (FDA) for apitegromab, described as “a muscle-targeted therapy designed and developed to provide clinically meaningful improvement in motor function for people living with SMA [spinal…
Briefly: SMA Drug Submitted to FDA for Biologics License; Study Shows that Somatosensory Stimulation Can Affect Hand Choice
Briefly: NBC to Provide Record Coverage of Paralympics; Cure SMA Announces 2025 Conference Dates
Featuring the International Paralympic Committee, NBC, and Cure SMA.
NBC Announces Record Coverage of Paris Paralympic Games NBCUniversal will provide record-breaking coverage of the Paris Paralympic Games, Aug. 28-Sept. 8, according to the International Paralympic Committee (IPC). The IPC said the upcoming coverage, “the most comprehensive” in U.S. media history, will include more than 140 hours of television broadcast on NBC, USA Network, CNBC,…
Cure SMA Annual Community Update Survey Now Open
The organization is seeking input from adults with spinal muscular atrophy.
Cure SMA — the advocacy, research and support organization for people living with spinal muscular atrophy — is calling for participants for its annual Community Update Survey. In an April 4 announcement, the organization said, “For the past seven years, the Cure SMA Community Update Survey has collected data and information on the SMA community’s…
Briefly: NCART Posts Payer Relations Position; SMA Organization Approves Grant
Featuring the National Coalition for Assistive and Rehab Technology and Cure SMA.
NCART Seeks Manager of Payer Relations The National Coalition for Assistive and Rehab Technology (NCART) is seeking a Manager of Payer Relations who will be “responsible for implementing and managing the NCART State Advocacy Program,” according to the organization’s website. “The individual will monitor, analyze, report and work with a team of dedicated payer and…
‘Stuck Inside’ Report Details Caregiving Challenges for People with SMA
Report describes caregiving shortfalls, as well as MRADLs affected.
A new national report describes in micro and macro detail the many caregiving-related challenges faced by people living with spinal muscular atrophy (SMA). “Stuck Inside: A National Report on Caregiving for Individuals with Spinal Muscular Atrophy” was released by Cure SMA on Feb. 16, which was National Caregivers Day in the United States. SMA is…
Briefly: New Advocacy Efforts in Puerto Rico; ISWP Seeks Programme Director; NMEDA Conference Correction
Featuring Cure SMA, the International Society of Wheelchair Professionals, and the National Mobility Equipment Dealers Association.
Cure SMA’s Newest Chapter is in Puerto Rico Cure SMA [spinal muscular atrophy] has a new chapter in Puerto Rico, and the new community is off to a quick start. In late January, more than 100 people celebrated the new chapter by holding Summit of Strength and Walk-n-Roll events. In a Feb. 7 press release,…