"ALS science moves way faster than it used to. There is hope. This is a really exciting time. We are at the beginning of an era where we hope to see some really remarkable progress." Dr. George Scangos, CEO of Biogen IDEC, during the ALS-TDI 2011 Annual Leadership Summit
Melatonin is Neuroprotective in ALS Mice
Mice with an ALS-like disease that were treated with melatonin experienced a later disease onset, survived longer, and had less nerve-cell degeneration than mice that didn't receive treatment. Melatonin is a powerful antioxidant that blocks damage to cells caused by free radicals (byproducts of cellular energy production. The hormone works to combat oxidative stress, thought by some to play a prominent role in ALS. Although melatonin is available for purchase over-the-counter in the United States, its effects on people with ALS are still unknown. Therefore, individuals are strongly advised NOT to use it to treat ALS until it has been proven safe and effective in people with the disease. See: MDA/ALS Newsmagazine
Selection Trial of High Dosage Creatine and Two Dosages of Tamoxifen - ALS Association and NEALS Webinar
Nazem Atassi, MD (Massachusetts General Hospital) will present study rationale, results and next steps for the now-completed Phase II Selection Design trial. After his presentation, Dr. Atassi will be available for questions. Interested people can join the webinar on Monday, May 20th at 3:00pm EST. NEALS typically posts clips of their completed webinars on their website. To register: WEBINAR
FDA Approves ALS Stem Cell Trial
Maryland biotherapeutics company Neuralstem announced that it has received approval from the FDA to conduct a phase II clinical trial to test its NSI-566 neural stem cells in people with ALS. Neural stem cells generate muscle-controlling nerve cells (motor neurons) and glia (a type of motor neuron support cell) in the brain. It is hoped the experimental therapy will improve respiratory function and prolong life in ALS. See: MDA/ALS Newsmagazine
MDA/ALS Newsmagazine offers information about 6 ALS Clinical Trials
An interactive graphic gives information about 6 drugs currently being tests to fight ALS. They are:
See: MDA/ALS Newsmagazine Clinical Trial article
ALS Therapy Development Institute (ALS-TDI) Drug Pipeline
Check out what ALS-TDI currently has in it's research pipeline: ALS-TDI Pipeline
Phase II Trial of Mexiletine to Begin Enrolling Soon
NEALS (The Northeast ALS Consortium) has announced a phase II trial investigating the safety and tolerability of two oral dosage levels of Meiletine (an anti-arrythmic medication). Enrollment for this study is anticipated to begin in June, 2013. See:
Survey Open for People with ALS
The Neurological Clinical Research Institute at Massachusetts General Hospital in Boston is conducting an online survey of people with ALS that they hope will help them improve symptom management. Results from the survey are expected to help investigators understand which symptoms pose the most difficulties to people wit ALS and to prioritize future research that targets ALS symptom management. The survey does not ask for identifying date. It should take approximately 10 minutes to complete.
For more information about the survey: MDA/ALS Newsmagazine
To take the survey: ALS Symptom Management Survey
FDA / ALS Public Hearing
ALS patients, caregivers, physicians, scientists, and other concerned individuals addressed a panel of representatives from the FDA on February 25, 2013. The day can be summed up by Robert Anderson, a person living with the disease. Using a computer-generated voice on his tablet because he an no longer speak, he told the FDA panel: "ALS is fast. We need FDA to be faster." See article: ALS Association
Webcase of the hearing is available online at the FDA's website: http://tinyurl.com/azsnrb6
ALS National Registry
The National Registry (run by the Center for Disease Control's Agency for Toxic Substances and Disease Registry) is a national database of information from patients and families designed to speed the search for effective ALS treatments.
By compiling a large database of information, the ATSDR hopes to learn more about the incidence and prevalence of ALS, how the disease develops, and what types of treatments and interventions are beneficial.
Patients and/or their caregivers are encouraged to register and fill out short surveys about their and their families’ health histories, their military background, as well as environmental, occupational and other exposures.
To get more information about the National Registry and/or to register, click here: National Registry