In 1992, May was officially declared ALS Awareness Month to recognize and honor the ALS community, including people living with ALS and their family, friends, and caregivers.
ALS (Amyotrophic Lateral Sclerosis) is also known as Lou Gehrig’s disease to some. It is a neurodegenerative disease that attacks the motor nerve cells responsible for movement, causing progressive weakness. Thanks to dedicated research over the years, we now have 3 medications to slow progression and many to help with symptoms. Research continues to be conducted to identify more effective therapies.
ALL ALS is a research study that collects information and samples (blood and sometimes spinal fluid) from people living with ALS and those who carry a gene that might cause the disease to facilitate research that will identify new treatments for ALS.

IMPACT OF ALL ALS SO FAR:
- 32 Active Sites
- 447 Total Participants Enrolled
- 82 Fully Remote Participants Enrolled
- 14,799 Blood Samples
- 1,778 Cerebrospinal Fluid Samples
How can I get involved in ALS Awareness Month?
There are many ways to get involved, including:
- Raise Public Awareness: Spread the word on ALS and increase public awareness by engaging with the general population and ALS community via personal connections, clinic and hospital relationships, and social media platforms.
- Engage with Government: Address ALS-related issues with your local, regional, or national governmental representatives.
- Support ALS-Organizations: Join or donate money to ALS-associated organizations, like the ALS Association, the ALS United network, I AM ALS, NEALS, Les Turner ALS Foundation, ALS Therapy Development Institute (ALS TDI), and Compassionate Care ALS.
- Participate in Research: Whether you have ALS or not, you can get involved in research and truly make a difference in bettering ALS understandings and advancing ALS drug and therapy development. To investigate ALS research opportunities, visit the NEALS “Search for a Trial” finder, ALS Therapy Development Institute’s (ALS TDI’s) Trial Navigator, or ClinicalTrials.gov. Additionally, ask your general clinician or other healthcare professionals for information about ALS research occurring in the surrounding clinics and hospitals.
- Attend or Volunteer at Events: For local or regional ALS events, simply search for “ALS events near me” in the search engine of your choice. However, here is a short list of some upcoming ALS events that might interest you:
- May 7-10: I AM ALS Community Summit in Washington D.C.: join an event focused on providing a knowledgeable, safe, and hopeful space for people living with ALS and their family, friends, and caregivers.
- May 17: Night of Hope in Kansas City, MO: attend a dinner, auction, and award show to celebrate members of ALS community and ALS Association network.
- May 18: Run for Hope 5 in Norristown, PA: walk or run, raise funds, and raise awareness for the ALS community by attending the Hope Walks event with the ALS Hope Foundation.
- May 19: ALS Golf Classic in Valencia, CA: spend a day playing golf, raising funds, and raising awareness for the ALS community at this event through ALS Network.
- May 20: Fight ALS Film Fest: join a film and book panel to discuss the life of Lou Gehrig. Make sure to watch “Pride of the Yankees” and read “Luckiest Man” to be fully prepared for the ALS TDI’s virtual event.
- May 31: Faces of ALS: read, like, and share the tributes to honor ALS patients that have been posted on ALS ONE’s social media channels throughout the month.