New DOT Rule Will Require Truly Accessible Lavatories on New Single Aisle Aircraft

Leave a Comment / Advocacy, Latest News /

On the anniversary of the Americans with Disabilities Act, the U.S. Department of Transportation (DOT) announced a final rule that will require airlines to take short- and long-term action to make lavatories on new single-aisle aircraft more accessible for people with disabilities, including those who fly in a wheelchair. “The inability to safely access and […]

New DOT Rule Will Require Truly Accessible Lavatories on New Single Aisle Aircraft Read More »

SMA Scientists and Clinicians from Around the World Gather at the 27th Annual SMA Research & Clinical Care Meeting

Leave a Comment / Conference, Latest News, Research /

At the end of June, SMA researchers and clinicians from around the world met in Orlando, Florida, for the 2023 Annual SMA Research & Clinical Care Meeting.   The annual meeting provides an opportunity for SMA scientists and clinicians to share their most recent discoveries and learnings, and is an incubator for collaborations, including cross-disciplinary

SMA Scientists and Clinicians from Around the World Gather at the 27th Annual SMA Research & Clinical Care Meeting Read More »

Thank You for an Amazing 2023 Annual SMA Conference!

Leave a Comment / Conference, Front Page News, Uncategorized /

Thank you to everyone who attended the 2023 Annual SMA Conference at Disney’s Yacht & Beach Club in Orlando, Florida! It was an impactful weekend of opportunities to connect, learn, and have fun. We are happy to announce that, including on-site registration, there were over 3,200 attendees in total – a record for the Annual

Thank You for an Amazing 2023 Annual SMA Conference! Read More »

Big Week in Washington for Cure SMA-Supported Legislation

Leave a Comment / Advocacy, Front Page News, Latest News /

This week, bills to address everyday challenges faced by individuals with spinal muscular atrophy (SMA) took important steps forward in the U.S. Congress. A key aviation bill that includes a section that will make air travel safer and more accessible for passengers with disabilities, including SMA, was approved by the U.S. House of Representatives by

Big Week in Washington for Cure SMA-Supported Legislation Read More »

Cure SMA’s 2022 State of SMA Report

Leave a Comment / Front Page News, Latest News, Research /

Cure SMA is pleased to announce the launch of the second annual State of SMA report. The purpose of this report is to share highlights from Cure SMA’s three databases: a patient-reported database with data from over 9,700 affected individuals worldwide that also incorporates longitudinal data from our annual community update survey; the SMA clinical

Cure SMA’s 2022 State of SMA Report Read More »

Individuals with SMA Describe New Travel Hiccups and Wheelchair Damage in Their Air Travels to Cure SMA National Conference

Leave a Comment / Conference, Front Page News, Latest News /

A record-number of individuals with spinal muscular atrophy (SMA), a neuromuscular disease, travelled to Orlando to attend Cure SMA’s national conference from June 29 to July 2. Several adults with SMA and families of children with SMA reported damage to their wheelchairs and other air travel hiccups that impacted their conference experience. These latest travel

Individuals with SMA Describe New Travel Hiccups and Wheelchair Damage in Their Air Travels to Cure SMA National Conference Read More »

New Data at Cure SMA Highlight Potential Benefit of SPINRAZA® (nusinersen) in Infants and Toddlers with Unmet Clinical Needs After Gene Therapy

Leave a Comment / Conference, Industry Updates, Latest News /

Biogen Inc. announced new SPINRAZA® (nusinersen) data aimed at answering critical questions for the spinal muscular atrophy (SMA) community. The data were presented at the SMA Research & Clinical Care Meeting hosted by Cure SMA this week in Orlando, FL. Interim Clinical Outcomes from RESPOND RESPOND is an ongoing two-year, phase 4 open-label study to evaluate

New Data at Cure SMA Highlight Potential Benefit of SPINRAZA® (nusinersen) in Infants and Toddlers with Unmet Clinical Needs After Gene Therapy Read More »

Four-Year Follow-Up Data for Genentech’s Evrysdi Show Continued Increase in Number of Children With a Severe Form of Spinal Muscular Atrophy (SMA) Able to Sit, Stand and Walk

Leave a Comment / Conference, Industry Updates, Latest News /

Genentech, a member of the Roche Group, announced today new long-term data for Evrysdi® (risdiplam) from the open-label extension (n=50) of the pivotal FIREFISH study, reinforcing its sustained efficacy and safety profile in children with Type 1 spinal muscular atrophy (SMA). FIREFISH is a two-part study in babies aged 1-7 months at the time of enrollment.

Four-Year Follow-Up Data for Genentech’s Evrysdi Show Continued Increase in Number of Children With a Severe Form of Spinal Muscular Atrophy (SMA) Able to Sit, Stand and Walk Read More »

Luke 18:1 Foundation Donates $500,000 to Cure SMA to Support Groundbreaking SMA Research and Care

Leave a Comment / Conference, Front Page News, Latest News /

Chicago, June 30, 2023 – Cure SMA receives a surprise gift in the amount of $500,181 from the Luke 18:1 Foundation, a 501(c)3 organization founded in Dallas, TX, at the 2023 SMA Annual Conference. The Luke 18:1 Foundation was created by Daniel and Nicole Stickane in honor of their son, Luke, who was diagnosed with

Luke 18:1 Foundation Donates $500,000 to Cure SMA to Support Groundbreaking SMA Research and Care Read More »

Scroll to Top