Joining Together to Fight ALS

Joining Together to Fight ALS

ALS research is essential in the battle against the disease. The National ALS Registry helps connect researchers and people who are living with the disease to learn more about what causes ALS and possibly lead to better treatments. Learn more about how we can all fight ALS together.

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The cause of ALS is unknown, and there is currently no cure. The National ALS Registry is the largest population-based registry in the United States that focuses on collecting information to help scientists learn more about who gets ALS, and potential causes. The Registry supports research, and people living with ALS, in multiple ways, and members of the ALS community can take part.

May is National ALS Awareness Month, and this year, the National ALS Registry would like to thank the thousands of people living with ALS who have already enrolled in the Registry and everyone who has joined together in the fight against ALS.

The Registry could not take place without the help of people living with ALS, caregivers, researchers, healthcare providers, neurologists, and supporters. Everyone touched by ALS has a story; piecing these stories together could ultimately help researchers come to a deeper understanding of the disease.

People Living with ALS Can Help Future Generations

ALS patient and caregiver

The Registry could not take place without the help of people living with ALS, caregivers, researchers, healthcare providers, neurologists, and supporters.

ALS research counts on people living with ALS to tell their stories. The National ALS Registry makes it easy for patients to join and tell their stories through risk factor surveys, clinical trials, research studies, and the National ALS Biorepository. People living with ALS can help by joining the Registry and completing risk factor surveys. Every piece of information provided helps researchers better understand the disease and its possible causes.

By joining the Registry, people with ALS can also be informed about clinical trials and research studies they may qualify for. The Registry makes it simple for you to be part of making a difference in finding answers about ALS.

When joining the Registry, people living with ALS can also choose to donate biological specimens to the National ALS Biorepository. This Biorepository collects samples for future scientific research, offering researchers crucial DNA and data needed for forming a more complete picture of the disease and its potential causes. The service is easy, free, and can be done from the comfort of the patient’s own home.

The Registry allows persons with ALS and their caregivers to not only take part in research, but to fight back, help defeat ALS, and change the lives of future generations.

“Because of the National ALS Registry, I am a part of the research. I am helping future generations.”

“Because of the National ALS Registry, I am a part of the research. I am helping future generations.” – John, a person with ALS.

Dedicated Research is a Priority in the Battle Against ALS

There is so much that we don’t know about ALS, meaning dedicated research is a priority. The National ALS Registry helps provide a pathway for greater understanding through research. From the Registry, researchers can request risk factor survey data to study, as well as funding to help further their efforts.

Progress against ALS could not happen without researchers who dedicate their time and efforts to help find a cause and treatment options for ALS. Through the Registry, researchers can use the clinical trial notification system to connect with patients interested in participating in clinical trials and research studies.

Participation Starts with You

Eric Sorenson, MD, Professor and Division Chair, Neuromuscular Diseases, Department of Neurology, Mayo Clinic, Rochester, MN

“The Registry is a tremendous resource for researchers—they can use the Registry to recruit persons living with ALS for studies, which would be hard because it’s not a common disease.” – Eric Sorenson, MD, Professor and Division Chair, Neuromuscular Diseases, Department of Neurology, Mayo Clinic, Rochester, MN

In addition to people with ALS and researchers, others also have an opportunity to make a difference, from the very beginning of a patient’s ALS journey. Healthcare providers, caregivers, and other members of the ALS community can help by telling ALS patients about the Registry. By doing this, you help connect people living with ALS with the opportunity to tell their story. Their participation can become part of the story that changes the future of ALS.

Learn more about how we can all fight ALS together.

Page last reviewed: May 3, 2021