The results of a new Cure SMA study showed that people with spinal muscular atrophy (SMA) and their caregivers are willing to tolerate a range of risks while seeking potential treatment benefits. The advocacy association released its research report on March 6. “In the 2022 Cure SMA Risk/Benefit Survey, we asked individuals with SMA and…
Survey: SMA Patients Willing to Tolerate Significant Risks for Potential Treatment Benefits
Briefly: SMA Drug Submitted to FDA for Biologics License; Study Shows that Somatosensory Stimulation Can Affect Hand Choice
Featuring Scholar Rock and Scientific Reports.
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: 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…
‘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…