The guest blog post below was written by Heather Tomko, sharing her experience in the Ms. Wheelchair USA 2018 pageant. She is the reigning Ms. Wheelchair USA in addition to being a public health researcher and masters student. Heather is a lifelong Pittsburgh resident and lives with SMA Type II. Being in a pageant is […]
Heather Tomko Crowned as Ms. Wheelchair USA 2018 Read More »
The SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA and seeks to create open communication of early, unpublished data to accelerate the pace of research. The meeting also furthers research by building collaborations—including cross-disciplinary dialogue, partnerships, integration of new researchers and drug companies, and educational opportunities for junior
2018 SMA Researcher Meeting Summary: SMA Therapy Development Read More »
At 10 years old, Brynne Willis knew something was wrong; it was time for the Presidential Fitness Test required by public schools and she kept falling behind her peers. “I kept falling every time I tried to run and was the last to complete the one-mile run,” said Brynne. Worried about the cause of her
Community Spotlight: Brynne Willis Read More »
The SMA community officially recognizes August as Spinal Muscular Atrophy Awareness Month, an effort that Cure SMA has been coordinating since 1996. August is a great time to spotlight the work our community does year-round to raise awareness of and funds for SMA. In addition to our usual work – hosting and attending events, advocating
August is SMA Awareness Month! Read More »
The SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA and seeks to create open communication of early, unpublished data to accelerate the pace of research. The meeting also furthers research by building collaborations—including cross-disciplinary dialogue, partnerships, integration of new researchers and drug companies, and educational opportunities for junior
2018 SMA Researcher Meeting Summary: Clinical Research Studies for SMA Read More »
The SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA and seeks to create open communication of early, unpublished data to accelerate the pace of research. The meeting also furthers research by building collaborations—including cross-disciplinary dialogue, partnerships, integration of new researchers and drug companies, and educational opportunities for junior
2018 SMA Researcher Meeting Summary: Basic Research Podium Presentations Read More »
The SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA and seeks to create open communication of early, unpublished data to accelerate the pace of research. The meeting also furthers research by building collaborations—including cross-disciplinary dialogue, partnerships, integration of new researchers and drug companies, and educational opportunities for junior
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 Wisconsin newborn screening specialists who specialize in caring for children with
Wisconsin Moves One Step Closer to SMA Newborn Screening Read More »
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 one-day mini conferences, sponsored by AveXis, held in 16 cities across
Summit of Strength Program Kicks Off in Cincinnati Read More »
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 working together to identify new treatments for SMA. The two teams are
Cure SMA Awards $300,000 Grant to Kevin Hodgetts, PhD, The Brigham and Women’s Hospital Read More »
