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The Centers for Medicare and Medicaid Services (CMS) announced that they rescinded the “coverage reminder” that was issued last February that would have prohibited Medicare from covering SGDs that included functions such as email and internet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 …
Veterans Eligible for Specially Adaptive Housing (SAH) Grants
The Department of Veterans Affaris announced that veterans with ALS and those on active duty automatically are eligible for SAH Grants that provides veterans up to $68,000 to adapt their homes. This is a significant change to the SAH program …
U.S. Senators Mark Kirk (R-IL) and Barbara Boxer (D-CA) Support Regenerative Medicine Research
Senator Kirk and Senator Boxer introduced legislation to help accelerate the discovery of new cures for traumatic injuries and diseases including ALS, Alzheimer’s, cancer and diabetes by establishing a national strategy to support research into regenerative medicine.
Les Turner ALS Foundation Takes Action
The Les Turner ALS Foundation participated with The National Organization for Rare Disorders (NORD) in a letter writing campaign to urge Congress to reconsider repealing the Orphan Drug Tax Credit proposed by Chairman Dave Camp (R-Michigan). Together over 130 patient organizations and professionals …
FDA Conducts first-ever public hearing related to ALS
In February 2013, the U.S. Food and Drug Administration (FDA) conducted its first-ever public hearing specific to ALS. Patients, caregivers, physicians and researchers addressed a panel of representatives from the FDA. The ALS Association and MDA partnered together to represent the ALS …
