On 16 May 2014, a news story appeared on American television and online, highlighting dramatic improvements in a patient with ALS taking a nutritional supplement called lunasin. This webinar will review how ALSUntangled investigated this story and eventually graded lunasin with regard to its table of evidence system. It will show how lunasin was then incorporated into a patient-centric pilot trial within the "replication of ALS reversals" program. The final results of this pilot trial will be presented. Finally, it will review other theories that might explain ALS reversals, show preliminary results from experiments testing these theories, and describe our next steps.
In partnership with The ALS Association, NEALS offers live webinars for people with ALS, caregivers and the broader ALS community. Topics include updates on clinical trials, best practices for clinical care, and current research efforts in ALS causes and treatments. Our webinars also offer participants the opportunity to ask questions directly of the experts running clinical trials and conducting research activities.
Dr. Shafeeq Ladha from Barrow Neurological Institute will review the clinical trial of Actemra in ALS patients and provide a trial update. He will discuss the rationale for using the drug, the role of inflammation in ALS progression and the addition of the [11C]PBR28-PET scan to the study protocol.
The AMX0035 webinar has been rescheduled for January 10th at 12:00 PM EST. Dr. Sabrina Paganoni, Massachusetts General Hospital, will discuss CENTAUR, a new trial for people with ALS. CENTAUR ("Combination of Phenylbutyrate and Tauroursodeoxycholic Acid") is a Phase 2 trial that will test the efficacy and safety of AMX0035 for the treatment of ALS. It will also test the impact of AMX0035 on several disease biomarker and provide insights into ALS disease biology. CENTAUR will enroll 132 participants nationwide.
Speaker: Shafeeq S. Ladha, M.D., Barrow Neurological Institute
ALSA-BIO3 is an observational clinical study funded by ALSA and the Fulton Family Foundation. In this study, biofluids as well as clinical and electrophysiologic measures will be collected from the same participants at multiple time points, and placed in repositories for future use. By building the NEALS Biobank, BIO3 helps to bolster a resource that will help scientists and clinicians make new discoveries and develop new treatments for ALS.
Speaker: Sherry Kolodziejczak, MS, OTR/L, Crestwood Medical Center
This presentation will review the documentation requirements for power wheelchair evaluation. The Medicare Power Wheelchair form will be reviewed in a line-by-line basis teaching the required documentation requirements. Required documentation areas also discussed include the Physician Face-to-Face Exam, the 7 element order, the therapist Specialty Examination, and the detailed product description/letter of medical necessity. When proper submission of the power wheelchair evaluation documentation follows the 9 step Algorithm, approval and delivery of power wheelchair to the client is assured.