Kara and Ryan Forcier, of Stillwater, Minn., were on a rollercoaster almost immediately after the birth of their son, Zachary. Zachary was born with skin lesions that turned into blood clots, which almost led to having his limbs and digits amputated. Thankfully this was not the case, and after the skin lesions healed, Kara and […]
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John and Krista Scurria, of Baton Rouge, La., believe in a parent’s intuition. Krista first became worried about the development of her oldest child, Josh, while she was still pregnant with him. But doctors disregarded her concern, attributing it to first-time parent naiveté. However, she and John continued to worry after Josh was born, and
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During our last fiscal year—July 1, 2018, to June 30, 2019—Cure SMA funded more than $7 million in new research and ongoing research. The resources will help accelerate research and ensure we are developing treatments for all types, ages, and stages of SMA. The areas funded include: Basic research, with a focus on funding approaches
A Look Back at 2019: Cure SMA Research Year-in-Review Read More »
With an incidence of approximately one in 11,000, more than 360 infants will be born annually with spinal muscular atrophy (SMA). Newborn screening can help to pre-empt irreversible motor neuron loss, increase prompt intervention, and eliminate long diagnostic delays. The impact of early diagnosis has been demonstrated through several studies that reinforce the importance of
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
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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
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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 »
