Olympic medalist Ron Joseph waited a long time to be inducted into the U.S. Figure Skating Hall of Fame, but he was unable to attend the ceremony in-person after being diagnosed with ALS. But he didn’t want to miss the opportunity raise awareness about the disease for the ALS community.
Weather and other natural emergencies can, and do, occur everywhere, at any time of year. For people living with ALS, their families and caregivers, having a plan for how to deal with emergency situations is vital because of the challenges the disease presents.
Our inaugural ALS Nexus conference brought members from across the ALS community in care, research and advocacy together to connect in a way that’s not been seen before, working and collaborating to change the future of the disease.
We are shining a spotlight on one of our current Milton Safenowitz Postdoctoral Program Fellows, Alexander Lin-Moore, Ph.D., a postdoctoral researcher at Brown University.
From July 14-17, the ALS community will be coming together in Texas at ALS Nexus to work on making ALS livable for everyone, everywhere, until a cure is found.
Currently, ALS is considered a “diagnosis of exclusion,” meaning people experiencing ALS-like symptoms often have to undergo a battery of different tests designed to rule out other conditions. This means it takes, on average, 10-15 months from the time a person first notices symptoms to receiving an ALS diagnosis.
Reducing this time to diagnosis is critical to avoid unnecessary testing and medical procedures and for people living with ALS to get access to multidisciplinary care and treatments that can help maintain their quality of life.
It has now been 85 years since Lou Gehrig stood on the field at Yankee Stadium on July 4, 1939, and delivered his “Luckiest Man” speech as part of Lou Gehrig Appreciation Day. The speech itself has become the stuff of baseball lore, even though no complete recording, on film or audio, remains.