Spinal muscular atrophy is the number one genetic cause of death for infants, and 1 in 50 people carry the genetic mutation that causes SMA. But even so, many people are not familiar with SMA. Thanks to our community, that is changing. Melissa Joan Hart recently posted about SMA awareness on her Instagram and Twitter […]
How Our Cure SMA Community is Raising Awareness Read More »
When our year-end campaign began in mid-November, we set an initial goal of raising $540,000. Our community quickly met that challenge, so we increased our goal to $750,000—the most ever raised as part of our annual campaign. We surpassed that goal with over $770,000 by the end of December. So now we’re setting our sights
Cure SMA Annual Campaign Sets $1 Million Goal Read More »
Over the past decade, one of the most important advances in SMA drug development has been the number of pharmaceutical companies investing in treatments for SMA. Ten years ago, we had just one company. Now, we have a dozen. These additional companies bring additional resources and expertise that will get us to treatments and a
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On Friday, August 22, 2014, the 10th Annual Grant Sheppard Memorial Scramble for SMA was held at Hickory Hills Country Club in Chilton, Wisconsin. This golf event is in memory of Grant Thomas Sheppard, SMA type I. The golfers and volunteers had a fantastic day filled with lots of fun and laughter. Everyone had a
10th Annual Grant Sheppard Memorial Scramble Reaches Milestone Year Read More »
Cure SMA has awarded a $140,000 research grant to Francesco Lotti, PhD, at Columbia University, for his project, “Role of Sumoylation in SMN Function and SMA Pathology.” Survival motor neuron (SMN) protein is critical to the function of the nerves that control our muscles. We know that individuals with spinal muscular atrophy don’t correctly produce
Cure SMA Awards $140,000 Grant to Francesco Lotti, PhD, of Columbia University Read More »
The US House of Representatives Energy and Commerce Committee has released the 21st Century Cures discussion document. The 21st Century Cures initiative was created to investigate how the government can help “accelerate the discovery, development, and delivery of promising new treatments and cures for patients.” This initiative is led by Rep. Fred Upton, who also
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Matthew A. Halanski, a Cure SMA-funded researcher from University of Wisconsin – Madison, was the lead author on, “Assessing the Needs of the SMA Population,” an article recently published in the journal Sage Open. Drawing on responses from both families and healthcare providers, the article investigated what medical issues are most important to families affected
January 20 is a day dedicated to the social acceptance of disability and to honor the late Annie Hopkins, SMA type II, who is the founder of 3E Love and creator of the International Symbol of Acceptance. Acceptance is created from an Empowered movement that Educates others to Embrace diversity and Love Lifeby seeing beyond
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Swiss drugmaker Roche has agreed to buy privately-held Trophos. Roche, the third largest pharmaceutical company in the world, will now bring its resources to help move olesoxime forward. Olesoxime is a neuroprotectant being developed to treat spinal muscular atrophy. At the 2014 Annual SMA Conference, Dr. Eric Dessaud of Trophos presented results of a Phase
Roche Buys Trophos to Continue Work on SMA Drug Read More »
Cure SMA has awarded a $30,000 clinical care grant to Deborah Boroughs, RN, MSN, for her project focusing on caregiver training. Individuals with SMA have complex and unique medical needs. However, parents and other in-home caregivers often don’t receive the information and training they need, especially when the individual is discharged from the hospital. This
