News
March 21, 2019
Record Number of Abstracts Submitted for the 2019 SMA Researcher Meeting
Abstract submission is now closed for the 2019 SMA Researcher Meeting. We are excited to announce that we received 166 submissions, a record number. Our submissions come from researchers in 20 countries, 11 companies, and close to 65...
Topics: Research, Front Page News
March 19, 2019
Cure SMA and Parent Project Muscular Dystrophy Announce Collaboration
Today, Cure SMA and Parent Project Muscular Dystrophy (PPMD) announced their strategic collaboration to collect real-world data to improve the lives of those affected by...
Topics: Support & Care, Our Impact, Front Page News
March 14, 2019
Cure SMA Launches Third Annual Community Survey to Address Important Issues in SMA Treatment
For the past several years, we’ve been working to collect data and information on our community’s experiences, goals, hopes, and challenges. We know that the voice of our community is powerful. By sharing our stories, we can communicate our priorities to the FDA...
Topics: Community & Awareness, Research, Front Page News
March 8, 2019
Cure SMA Advocates for SMA Community at ICER Hearing
On Thursday, March 7, Cure SMA testified on behalf of the SMA community at a meeting of the Institute for Clinical and Economic Review (ICER). ICER is an independent health policy group that evaluates the effectiveness of drug treatments, and the costs associated with those treatments.
The purpose of the meeting was to review both...
Topics: Research, Advocacy, Front Page News
March 5, 2019
Biogen Provides 2019 Community Update on Spinraza
Dear members of the SMA community,
As we celebrate Rare Disease Day 2019, we are honored to continue supporting the spinal muscular atrophy (SMA) community. In recent weeks and months, we engaged the community on a number of different initiatives and are excited to share updates on our...
Topics: Clinical Trials, Research, Front Page News
March 1, 2019
Join a Walk-n-Roll Near You
The Cure SMA Walk-n-Roll is a fun, family-friendly event that supports Cure SMA’s mission of driving breakthroughs in treatment and care and providing families the support they need for today. We welcome you to join us as an individual or start a team with your family, friends,...
Topics: Community & Awareness, Events & Fundraising, Front Page News
March 1, 2019
Genentech/Roche and Cure SMA to Co-Host Webinar
On Monday, March 11th, at 12pm CST (10am PST/11am MST/1pm EST) Genentech/Roche and Cure SMA will co-host a webinar for the SMA community. During the webinar, you’ll hear from Genentech/Roche on their history working with the SMA community, and their investigational medicine risdiplam....
Topics: Clinical Trials, Research, Front Page News
February 27, 2019
New Dates and Locations Announced for 2019 Summits of Strength
Cure SMA is pleased to announce that we will be continuing the Summit of Strength Program in 2019, adding 20 new events from March through November.
The Summit of Strength is a single-day educational event hosted by Cure SMA. Summits are crafted to provide information for people of all...
Topics: Community & Awareness, Support & Care, Front Page News
February 26, 2019
Scholar Rock Announces Positive Interim Results from Phase 1 Trial of SRK-015 in Healthy Volunteers and Updates on Future Development Plans
Scholar Rock today announced positive interim results from the ongoing Phase 1 single- and multiple-ascending dose clinical trial of SRK-015 in...
Topics: Clinical Trials, Research, Front Page News
February 25, 2019
Community Spotlight: Kristen Smith
The SMA community has been lobbying state and federal government for years. Kristen Smith shares how she became involved with advocacy.
Kristen Smith describes herself as an artist and advocate. A powerful combination during a time where people across the country are standing...
Topics: Community & Awareness, Advocacy, Front Page News
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