As awful a disease it is, there is new research on ALS is happening, so let’s keep the hope!
Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disease that causes progressive muscle weakness over time. Often times, the breathing muscles eventually go, the person cannot breathe and he/she dies. It’s a horrible disease, and there is currently no cure. It is fatal. The most famous person to have it is New York Yankee’s Lou Gehrig, and ALS was often called Lou Gehrig’s Disease. And while the disease took the life of one of America’s most beloved baseball players, listening to Gehrig’s “the luckiest man on the face of the earth” speech which he delivered on July 4, 1939 to a sold-out crowd at Yankee stadium is well worth the listen.
In this episode of Causes or Cures, I chat with an equally positive ALS warrior, Daniel Barvin. He is Vice President of Operations and Patient Advocacy at Coya Therapeutics, a trailblazing company working groundbreaking new research on ALS and Alzheimer’s. In the podcast, Daniel will tell us more about the debilitating and fatal disease ALS and the therapies they are testing at Coya Therapeutics which target T cells, cells that form an important part of the immune system.
Daniel’s fight against ALS is personal. He has lost several family members to ALS, including his father, uncle, grandfather, and aunt. He is also a carrier of the ALS gene… something he learned several years ago. This means it may only be a matter of time until he shows signs of the disease. In the podcast, he discusses what it feels like to know that.
Daniel also talks about finding a way to have kids with his wife to avoid passing on the ALS gene and finding the group End the Legacy, a not-for-profit organization that provides support and resources for the 1 million individuals with or at risk of genetic ALS and FTD. In addition to the new research on ALS that is happening, End the Legacy and similar endeavors that were not widely available in years past provide tremendous support to those with ALS.
After you listen to the podcast about new research on ALS and hear Daniel’s amazing story, consider checking out this podcast with a brilliant neuroscientist on the function of dreams. Did you ever ask yourself WHY we dream? It’s a fascinating topic and, boy, the conversation was fun.
As a reminder, my contact info:
From my Youtube Channel, a clip of my podcast with Daniel: