Kyle and Laura Derkowski are co-chairs of the Cure SMA Virginia Chapter. The pair met during their first year in college through a mutual friend and were married in December 2014. The Derkowskis recently shared with Cure SMA their perspective on hope, community and leadership. At 18 months old, Kyle was diagnosed with spinal muscular […]
Community Spotlight: Kyle and Laura Derkowski Read More »
Biogen has announced it will present new data illustrating the rapidly progressive nature of spinal muscular atrophy (SMA) in adults, adolescents and older children at the Muscular Dystrophy Association (MDA) Clinical and Scientific Conference in Orlando, Florida (April 13-17, 2019). Other Biogen presentations will highlight the benefits of pre-symptomatic treatment with data from the Nurture
Biogen Presents New Data Regarding Adults and Infants with SMA Read More »
Cure SMA recently launched the third annual Community Update Survey to address important issues in SMA treatment and care. The Community Survey covers several areas that are relevant to the real-world experiences of people living with spinal muscular atrophy (SMA). Lisa Belter is the Senior Research Data Analyst at Cure SMA. Every year, she and
Community Update Survey Q&A Read More »
The 2019 Annual SMA Conference is just over two months away and Cure SMA is excited to announce the details of the events held at this year’s conference. Open to all conference attendees, the popular Meet & Greet will be held on the evening of Friday, June 28th. This event includes the Researcher Relay Race
2019 Annual SMA Conference Events Announced Read More »
Cure SMA is pleased to share that we have granted over 900 scholarships to date for the Annual SMA Conference taking place June 28-July 1, 2019 at Disneyland Resort in Anaheim, CA. Each year, the organization offers scholarships to newly diagnosed families, adults (18 and over) with SMA, and general Conference scholarships to help SMA
Cure SMA Grants More Than 900 Scholarships for Annual SMA Conference Read More »
In 2018, Cure SMA launched the SMA Care Center Network, a collection of specialized clinics across the nation to help ensure all those living with spinal muscular atrophy (SMA) are able to receive high-quality, multidisciplinary care and access to new therapies. As of April 2019 there are 10 contracted partner sites, with a total of
Cure SMA Care Center Network Expands to 10 Sites Read More »
Cure SMA has released the schedule for the 2019 Annual SMA Conference, which will be held at the Disneyland Hotel in Anaheim, California from Friday, June 28 – Monday, July 1. We look forward to reuniting as a community at this year’s conference in order to lend each other support and strength, and to learn
2019 Annual SMA Conference Schedule is Released Read More »
The 2019 Annual SMA Conference is rapidly approaching and conference registration is growing just as quickly! This year’s conference will be one of the biggest ever and will include the Family Conference, the Researcher Meeting, and the Clinical Care Meeting. Hotel rooms are rapidly being reserved, and are already over 80% booked – Be sure
2019 Annual SMA Conference Registration Continues to Grow! Read More »
Cure SMA and Cure SMA Canada have awarded a $150,000 research grant to Jocelyn Cote, PhD, at the University of Ottawa for his project, “Investigating the contributions of CARM1 and HuR misregulation to SMA skeletal muscle and NMJ defects.” While an essential role for SMN in spinal cord motor neurons remains central to the pathophysiology
Cure SMA Awards $150,000 Grant to Jocelyn Cote, PhD, University of Ottawa Read More »
Cure SMA is thrilled to continue to provide the Summit of Strength Program to local communities throughout the United States. The 2018 Summit of Strength Program was a great success, and the 2019 Summit of Strength Program has officially begun! Spinal muscular atrophy (SMA) is a disease that robs people of strength by affecting the
What is the Summit of Strength Program? Read More »
