“It truly feels as if my entire career path has been leading me to this role,” said Vos. “I am excited to bring my passion for patient care and advocacy, as well as my success using new technology to build new, innovative communication approaches, to lead MDA in the fast-changing world of research and patient care.”
After the news of MDA champion Jerry Lewis’s passing broke Sunday, scores of admirers took to social media to remember the comedian and philanthropist. Here are just a few of the thousands of tweets sent by some of the entertainment business’ brightest stars — and some of MDA’s staunchest partners. Want to add your remembrance to the chorus? Visit our Tributes page, where we are collecting memories for Jerry’s family.
Today, on the first Friday of ALS Awareness Month, the U.S. Food and Drug Administration (FDA) approved edaravone (brand name Radicava), to treat ALS (amyotrophic lateral sclerosis). Under development by Mitsubishi Tanabe Pharma America, Radicava was approved in 2015 to treat ALS in Japan. It’s the first drug to be granted FDA approval to treat ALS in the United States in more than 20 years.
For this latest round of awards, MDA reviewed 187 applications and had sufficient funds to approve funding for approximately 15 percent of them — 29 grants with a total funding commitment of more than $7 million.
Today, Marathon Pharmaceuticals, maker of the recently FDA-approved drug EMFLAZA, announced that they are pausing commercialization efforts in order to address the concerns about price and access to the drug from the Duchenne muscular dystrophy community. MDA will update our community with more information as it becomes available. We remain committed to ensuring that our families have the resources and assistance to begin and maintain treatments with emerging therapies for neuromuscular diseases.