The FDA has approved Radicava™ (Edaravone), the first new treatment specifically for ALS in 22 years. The drug was approved by the FDA less than a year after Mitsubishi Tanabe Pharma Corporation submitted a New Drug Application. The only other approved treatment specifically for ALS, riluzole, was approved in 1995.
Last week, President Trump submitted his budget request to Congress. Included in the proposal are changes to funding for Medicaid, cuts to Social Security Disability Insurance (SSDI), cuts to the National Institutes of Health (NIH) and the complete defunding of the National ALS Registry at the Centers for Disease Control (CDC). The ALS Association is very concerned that these proposals will negatively impact people affected by ALS and will slow down the progress we have made in research for treatments and a cure. We do not believe this is a partisan issue – Members of Congress on both sides of the aisle have expressed concerns about the cuts contained in the President’s budget.
Recently, we sat down with Stephen Winthrop, our newly elected Chair of The ALS Association Board of Trustees. He was diagnosed with ALS in November 2013 and immediately focused his energy on the fight against ALS.
We are pleased to feature ALS researcher Dr. Sabrina Paganoni from Massachusetts General Hospital and Spaulding Rehab Hospital. She is this year’s recipient of the Clinician Scientist Development Award in ALS Research. The award gives her the freedom to pursue multiple ALS clinical studies, including an exciting new trial testing inosine.
One of the questions that people living with ALS often ask is what can I do to help ALS research? People with ALS can do that, with a personal contribution to the National ALS Registry in the newly launched National ALS Biorepository.
