News
July 17, 2018
Wisconsin Moves One Step Closer to SMA Newborn Screening
The Wisconsin Secretary of Health Services, Linda Seemeyer, recently approved the addition of SMA to the newborn screening panel through the administrative rule making process. SMA was nominated in November 2017 for addition to the Wisconsin panel. In December 2017, the Umbrella Committee of...
Topics: Our Impact, Advocacy, Front Page News
July 16, 2018
Summit of Strength Program Kicks Off in Cincinnati
As a national organization comprised of 34 chapters, we know it’s important to leverage our collective strength and provide our community with personalized, local support.
On Saturday, Cure SMA held its inaugural Summit of Strength in Cincinnati, OH. This is the first of 16...
Topics: Support & Care, Events & Fundraising, Front Page News
July 12, 2018
Cure SMA Awards $300,000 Grant to Kevin Hodgetts, PhD, The Brigham and Women's Hospital
Cure SMA has awarded a $300,000 preclinical drug discovery grant to Kevin Hodgetts, PhD, at the Brigham and Women’s Hospital, for his project, " Pre-Clinical Development of LDN-5178 for the Treatment of SMA.”
This grant will be conducted by two academic research teams...
Topics: Our Impact, Research, Front Page News
July 11, 2018
Dr. John Kissel, Chair of Neurology at OSU Wexner Medical Center, Retires After 40 Years
Dr. John Kissel has treated patients with neuromuscular disorders from all over the United States. He specializes in spinal muscular atrophy and has been instrumental in his practice at one of the country's leading centers in neuromuscular medicine.
Dr. Kissel’s interest in SMA...
Topics: Support & Care, Research, Front Page News
July 10, 2018
Roche Releases Community Update on Risdiplam
The following is a community update from Genentech/Roche on the risdiplam (RG7916) program.
Dear SMA advocacy community,
As requested, we are very pleased to share an update on the RG7916 program.
We would also like to extend a special thanks to study participants and...
Topics: Clinical Trials, Research, Front Page News
July 10, 2018
Cure SMA Awards $300,000 Grant to Umrao Monani, PhD, Columbia University
Cure SMA has awarded a $300,000 preclinical drug discovery grant to Umrao Monani, PhD, at Columbia University, for his project, " Restoring function at the NMJ: A novel means to treat SMA.”
A drug directed at SMN enhancement, Spinraza, has recently become available but is...
Topics: Our Impact, Research, Front Page News
July 3, 2018
HHS Secretary, Alex Azar, Recommends Nationwide Newborn Screening for SMA
Health and Human Services Secretary Alex Azar today approved the recommendation that newborn screening for spinal muscular atrophy be implemented nationwide. This recommendation was issued on February 8, 2018, by the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)....
Topics: Our Impact, Advocacy, Front Page News
June 28, 2018
SMA Newborn Screening Moves Forward in New Jersey
Earlier this month, the New Jersey State Senate Committee on Health, Human Services, and Senior Citizens unanimously approved S. 974. Introduced by Senator Troy Singleton, the bill would add SMA to the New Jersey’s...
Topics: Our Impact, Advocacy, Front Page News
June 25, 2018
Thank You For a Wonderful 2018 Annual SMA Conference!
Thank you to everyone who attended the 2018 Annual SMA Conference at the Hilton Anatole Hotel in Dallas, Texas! It was an impactful weekend of community, research and fun.
While the final numbers are still being counted, we are happy to announce that, including on-site registration,...
Topics: Community & Awareness, Conference, Front Page News
June 25, 2018
Summer 2018 Issue of Compass Now Available
The summer 2018 issue of Compass is now available online.
As part of our most recent round of funding, we’ve announced ten grants totaling $1,325,000 million for basic research.
This issue of Compass...
Topics: Our Impact, Research, Front Page News