What is ALS?
There are two different types of ALS, sporadic and familial. Sporadic, which is the most common form of the disease in the U.S., accounts for 90 to 95 percent of all cases. It may affect anyone, anywhere. Familial ALS (FALS) accounts for 5 to 10 percent of all cases in the U.S. Familial ALS means the disease is inherited. In those families, there is a 50% chance each offspring will inherit the gene mutation and may develop the disease. French neurologist Jean-Martin Charcot discovered the disease in 1869.Our sense of urgency has never been greater as we continue, with deepest thanks to all of those who have supported us along the way, to fight for strength, independence and life. (ALS Association) Learn more
Since our first ride MDA has made some great progress in the fight against ALS including the FDA approval of Radicava which is the first FDA approved ALS treatment in over 20 years. Radicava is thought to work by relieving the effects of oxidative stress. While in clinical trial those given Radicava showed significantly less decline in physical function compared to those of a placebo. Depending on the level of function some noticed a prolonged ability to get out of bed or eat unassisted.
Although we pause for a moment to recognize the recent successes, MDA is working hard to drive more therapies across the finish line. FDA approval of recent neuromuscular drugs is expected to encourage drug development all across the neuromuscular disease space. At MDA, we’re working hard every day to find solutions, and we won’t stop until treatments are available for all the diseases in our program.
To learn more about Ray Spooner, check out his blog www.RayslittleRide.com
In 2017 a 25 minute documentary was made about Ray and his story titled “R.S.” The IMDb page is here:
If you would like to rent or purchase the film you can do so on Amazon here