My son Pete and I began advocating to have SMA added to the newborn screening panel in Pennsylvania in December of 2017. Pete was 13-years old, type II SMA. He realized the impact that early diagnosis and treatment was having on SMA babies and thought he could make a difference. He has. Here is our […]
Community Spotlight: Allyson Henkel Read More »
After Max began receiving Spinraza in 2017, we wanted to do our part to help ensure that children born with SMA would be diagnosed as early as possible. Inspired by many others in the SMA community, we decided to pay a visit to our state senator’s office in Annapolis during SMA Awareness Month to ask
Community Spotlight: The Lasko Family Read More »
The complexities of newborn screening require a sophisticated, multifaceted approach. With this in mind, Cure SMA has been working on newborn screening through several different avenues, bringing our full resources to ensure that babies born with SMA have the opportunity to receive early treatment for maximum effectiveness. Advocacy We are working with family advocates, clinicians,
Cure SMA’s Approach to Newborn Screening Read More »
The first FDA approval of a therapy for SMA has created an opportunity for our community to move forward on another of our long-term priorities: newborn screening. SMA is the leading genetic cause of death for infants, but we have an historic opportunity to change that through newborn screening and early treatment. Currently, the average
SMA Newborn Screening Advancements Read More »
New York State will screen every child for SMA beginning October 1, according to the New York State Department of Health. New York joins Missouri, Utah, Minnesota, Indiana and Illinois as states that have adopted permanent screening for SMA. Since 2016, New York has been screening for SMA on a pilot basis. The data provided
New York to Implement Newborn Screening for SMA October 1st Read More »
Clinical trials for spinal muscular atrophy (SMA) help researchers answer important questions about the disease and investigational drugs, providing information that may help the development of future medical treatments. Although there is now an approved treatment, clinical trial participation may be a consideration for many families and individuals affected by SMA. Funding for clinical trials
What to Expect in a Clinical Trial Read More »
Cure SMA is excited to announce that 12 new Panthera pediatric lightweight wheelchairs have been purchased thanks to generous funding from Sweet Baby Zane. These specific chairs are normally a large out-of-pocket expense for many families, as they cost over $6,000 each and are not usually covered by insurance because they are not manufactured in
Sweet Baby Zane Funds New Equipment Pool Item Read More »
Cure SMA would like to thank the Cash Scanlon-Philips Foundation for their generous donation to fund a years’ worth of type II newly diagnosed care packages. These care packages are sent to every newly diagnosed SMA family, within the US after connecting with Cure SMA. These care packages include toys and helpful items for children with
Cure SMA Receives Generous Donation from the Cash Scanlon-Philips Foundation Read More »
In a recent paper titled, “Patient Reported Impact of Symptoms in Spinal Muscular Atrophy (PRISM-SMA)” Dr. Chad Heatwole and others describe a cross-sectional study of 359 adults with SMA using the International SMA Patient Registry. The goal of the study was to determine the frequency and relative importance of symptoms experienced by adults with spinal
Quinn Anton Jensen was diagnosed with spinal muscular atrophy (SMA) type II on March 2007 in Iowa City. Quinn’s mom, Nancy, recalls the genetic testing process took over a month. It was a stressful and frightening time and the Anton Jensens wish the diagnosis process was faster. Nancy recalls feeling devasted as there was still
Community Spotlight: The Anton Jensen Family Read More »
