News from the National ALS Registry
Below are the latest news from the Registry such as research notifications, new publications, and events.
Ed’s Story—Everyone with ALS Counts
Amyotrophic lateral sclerosis (ALS) is a fatal neurological disease that attacks the nerve cells. It first gained national attention as Lou Gehrig’s disease, named after the famous baseball player who was diagnosed with ALS in 1939. To date, the cause of ALS is unknown, and there is still no known cure. The disease strikes quickly, usually leading to death within 2–5 years of diagnosis. But every person with ALS has an individual story, and understanding these stories will help researchers ultimately piece together clues about this disease.
Ed Tessaro was diagnosed with ALS in 2009. As he learned to cope with this diagnosis, he reflects, “I’ve never considered myself a victim of the disease because I believe in my heart all of us have a wheelchair. In my case, it’s quite literal, but with everything that goes on in my life, I realize that every family has had a crisis.” One of the things that helps him and others with ALS is reaching out for community support and resources. “The ongoing struggle is to encourage newly diagnosed people to come in and talk about their condition. I want to help people learn about the National ALS Registry, clinical trials, and other resources that can provide support and hope.”
The National ALS Registry helps gather information from those who are living with this terrible disease. Researchers from all around the world can access the Registry data to help scientists learn more about what causes this disease. Everyone’s story is different, and everyone’s piece of the puzzle is essential. The Registry has found that almost 16,000 persons with ALS live in the United States, as of 2014. It is important to include as many people as possible living with the disease to get the most accurate information. When patients join, it helps give researchers more information. This could lead to a better understanding of the causes of ALS, and could help offer a better future for people with ALS in all communities
Concludes Ed, “It’s tough, but maybe we can fling open a door or two in the next couple of years of research. I’m happy just to stall this thing and get all of us to another chapter in our life.”
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Another fatal case of ALS: What can we do?
“Losing beloved football player Dwight Clark is just another reminder of how important the National ALS Registry is to support research. We need to help better understand the causes of this terrible disease and empower patients and researchers,” states Dr. Paul Mehta, a medical epidemiologist at the Centers for Disease Control and Prevention (CDC) /Agency for Toxic Substances and Disease Registry (ATSDR). Dr. Mehta is the principal investigator leading the National ALS Registry, the only national population-based registry in the U.S. that collects information to help scientists learn more about who gets ALS and what may cause it.
Many people know ALS as Lou Gehrig’s disease, named after the famous baseball player who got the illness and had to retire in 1939 because of it. ALS is a disease that affects the nerve cells that make muscles work in both the upper and lower parts of the body. This disease makes the nerve cells stop working and die. The nerves lose the ability to trigger specific muscles, which causes the muscles to become weak and leads to paralysis.
Almost 16,000 people in the United States were living with ALS in 2014; every year doctors diagnose about 5,000 more people. No one knows what causes most cases of ALS. ATSDR scientists have been studying many factors that could be linked with ALS such as heredity and environmental exposures. Other scientists have looked at diet or injury, including head trauma from sports. Although no cause has been found for most cases of ALS, a number of inherited factors have been found to cause familial ALS. In the future, scientists may find that many factors together cause ALS.
If you or someone you care about has ALS, you can learn more about the National ALS Registry here. Because everyone’s diagnosis is personal. And every personal story can help contribute more to fighting this terrible disease.
ALS: Much-Needed Help for a Disease With No Cure
- Larson T, C, Kaye W, Mehta P, Horton D, K, Amyotrophic Lateral Sclerosis Mortality in the United States, 2011–2014. Neuroepidemiology 2018;:96-103.
- Harrison D, Mehta P, van Es M, Stommel E, Drory V, Nefussy B, van den Berg L, Crayle J, & Bedlack R. “ALS reversals”: demographics, disease characteristics, treatments, and co-morbidities. Amyotroph Lateral Scler Frontotemporal Degener; 2018; DOI: 10.1080/21678421.2018.1457059.
- ATSDR has released the third report on the results of data gathered by the National ALS Registry. Learn more at: Third National ALS Registry Report
New ALS Research Notifications:
Click here to see clinical trials and epidemiological research studies that are using the Registry to recruit and how you can potentially participate. Note, by enrolling in the Registry, you can receive these notifications automatically in your registered email address.
- Page last reviewed: August 24, 2017
- Page last updated: August 24, 2017
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