Sporadic amyotrophic lateral sclerosis (SALS) accounts for 90% of all cases of ALS. Its etiology is largely unknown and it is not well studied in African Americans. SALS is thought to be a complex disorder in which an individual inherits …
MMWR in Brief
The Center for Disease Control and Prevention’s MMWR in Brief summarizes key points from “Prevalence of Amyotrophic Lateral Sclerosis – United States, 2010-2011.” New information in this report includes the first prevalence estimate and description of demographic characteristics of ALS …
Registry Adds Two New Surveys
The Agency for Toxic Substances and Disease Registry (ATSDR) added two additional risk factor surveys to the National ALS Registry. The new surveys ask about head trauma and health insurance coverage. There are now a total of 17 surveys designed …
EMBO Journal – April 29, 2015
Last month the lab published a review on the potential of using stem cells to probe disorders of the central nervous system at the EMBO Journal. You can read the full manuscript here (http://emboj.embopress.org/content/34/11/1456.long) Evangelos and lab members also attended …
Steve Gleason Act
The Steve Gleason Act was signed by President Obama on April 22, 2015 and will preserve access to speech generating devices (SGDs) and eye tracking technology for people with ALS. The bill will also allow people with ALS to keep …
Research Updates from Dr. Siddique’s Lab – April 2015
In a recent study published by Cirulli et al (Science, 2015 Feb 19) whole exome sequencing of 2,874 ALS patients confirmed several known ALS genes and identified TBK1 as a novel ALS gene. TBK1 is known to be one of several …
Les Turner ALS Foundation Researchers Find Parkinson’s Disease Gene Targets Brain Motor Neurons
From the lab of Dr. P. Hande Ozdinler, a researcher at the Les Turner ALS Research and Patient Center at Northwestern Medicine, comes a breakthrough in ALS research. Research performed by Javier Jara, Ph.D. and Baris Genc, Ph.D., under the …
Congress Acts on MODDERN Cures and Therapy Caps
Congress took action on two important ALS priorities enacting provisions of the MODDERN Cures Act and extending the exceptions process that enables people with ALS to continue to access needed therapy services. While this is an important victory, much more …
Speech Generating Devices & Centers for Medicare and Medicaid
The Centers for Medicare and Medicaid Services (CMS) announced that they rescinded the “coverage reminder” that was issued last February that would have prohibited Medicare from covering SGDs that included functions such as email and internet access. While this is …
Annual ALS Surveillance Meeting – August 13 – 14, Atlanta, GA
Foundation representatives Wendy Abrams, Executive Director, and Shari Diamond, RN, Director of Patient Services, were invited to attend the Agency for Toxic Substances and Disease Registry (ATSDR) Annual Surveillance Meeting to hear the first report on the National ALS Registry …
