Dear Members of the SMA Community, As part of Biogen’s ongoing commitment to individuals living with, and caregivers affected by, spinal muscular atrophy (SMA), we are pleased to announce updates to our SPINRAZA® (nusinersen) clinical development program – an extensive clinical data set in the treatment of SMA to date that includes more than 300 […]
Biogen Issues Q4 2019 Community Statement on Spinraza Read More »
Elizabeth and Brian Veit live in Jefferson City, Mo., with their two children—Benjamin, who is 6 years old, and Kate, who is 5 years old. By all accounts, Elizabeth’s second pregnancy was “completely normal,” and the health and vitality of her first child created little reason for concern. But when Elizbeth and Brian started noticing
Community Spotlight: The Veit Family Read More »
The 9th Annual “Hope on the Hill” Congressional Dinner was held on Tuesday, December 3, 2019 at The Willard Hotel in Washington, DC. More than 180 people from the SMA community – including families, government officials, and industry partners – attended the dinner, which raised $195,000 to fund advocacy efforts, research, and family support services.
The Fall 2019 issue of Compass is now available online. In this issue we provide a one-year update on the roll-out of the Cure SMA Care Center Network and its efforts to put processes in place that will allow for the development of an evidence-based standard of care to improve the lives of people with
Fall 2019 Issue of Compass Now Available Read More »
Maria Eleni Kaloidis is a 22-year-old in her final year at Post University. Like most women her age, she enjoys spending time with her family and friends while “drinking way too much coffee,” she adds. Despite showing symptoms the first few weeks of life, Maria was not diagnosed with spinal muscular atrophy (SMA) Type 1
Community Spotlight: Maria Kaloidis Read More »
We are excited to announce that registration is now open for the 2020 Annual SMA Conference, which will be held at Disney’s Yacht & Beach Club Resort in Orlando, Florida from Thursday, June 11 – Sunday, June 14, 2020. We hope you can join us for another magical weekend together in Disney World! With more
Registration Now Open for the 2020 Annual SMA Conference! Read More »
David Alvarez is a 19-year-old student from Seymour, Conn., majoring in Business Management/Administration and Marketing at the University of Bridgeport. He is also the founder of MADE Clothing, a business venture he began in high school to empower and remember those who have “made it” (or are currently “making it”) through their personal struggles. This
Community Spotlight: David Alvarez Read More »
The 2019 Summit of Strength Program was a huge success, with more than 135 speakers sharing their expertise on numerous highly rated and unique topics. We would like to thank these wonderful speakers and all attendees for making this year’s program so engaging and insightful. Summits of Strength are single-day, educational events providing information for
Update on Cure SMA Summit of Strength Program – Gearing Up for 2020! Read More »
There are now two treatments approved by the U.S. Food and Drug Administration (FDA) that target the underlying genetics of spinal muscular atrophy (SMA) and several others in clinical trials. The advent of these new treatments for SMA has led to community discussion around the possibility of combining therapies in the hopes of better outcomes.
Check Out the Cure SMA Booklet on “Scientific Considerations for Drug Combinations” Read More »
Just one more week until the 9th Annual “Hope on the Hill” Congressional Dinner in Washington D.C.! Next Tuesday, December 3rd, SMA families and advocates, government officials, and industry leaders will gather to discuss advancements in research, treatment, and patient care, as well as harness the latest momentum to set the course for the next
9th Annual “Hope on the Hill” Congressional Dinner Read More »
