ALS Must Not Defeat us: A Message Of Hope

– Alan Alderman was diagnosed in 2001 with Amyotrophic Lateral Sclerosis. Lou Gehrig’s disease is commonly known as ALS. This name was given to the famous baseball player who developed the illness.

ALS is a disorder that causes nerve cells in the brain to cease working and then die. Paralysis occurs when nerves cease being able to trigger certain muscles. Approximately 80 percent of those with ALS will die within the first two to five year of being diagnosed.

Following Mr. Alderman’s diagnosis, he was determined that ALS would eventually end his life but not take it.

Alan has been fighting ALS for the past 18 year. He is actively involved in fundraising, advocacy, as well as raising awareness for ALS. To raise awareness and funds for Row4ALS, he traveled 3,000 miles in a rowboat across the Atlantic Ocean.

Although most people don’t wish to row in a boat, there are things we can do to fight ALS.

The National ALS Registry collects information from patients like Mr. Alderman, who have this terrible disease. The National ALS Registry, which is based on the U.S. population, collects data to aid scientists in understanding ALS. Access to the Registry data can be accessed by scientists and researchers around the world.

Over the seven years that the National ALS Registry has been in existence, scientists have learned a lot. There is much more to be done to understand this disease. The Registry is dependent on the participation of people living with ALS in the United States.

Over 16,000 people with ALS are currently living in the United States, according to the Registry. The Registry also funds research to determine what causes ALS. This includes exposures to pollution and environmental toxins, genetic links and certain medical conditions.

Although we don’t yet know the exact causes of this condition, we do know that the Registry requires as many patients to register as possible in order to obtain a complete picture and understand the potential causes and possible treatments. Researchers do not have access to patient information.

This terrible disease is being diagnosed in nearly 5,000 more people every year. Every person’s story is unique, and each piece of the puzzle is important. Researchers gain more information from patients who join the Registry. This will allow for better understanding of the causes and may help to improve the lives of those living with ALS.

Visit the ALS Registry to learn more about ALS Registry if you or someone you love has it. www.cdc.gov/als.