ALS Awareness Month

ALS Community
ALS Awareness

In honor of ALS Awareness Month, Live Like Lou is reflecting on the legacy of Lou Gehrig and facts about ALS we encourage our community of supporters to understand and share. These facts have been shared through our social media channels this month and we encourage you to download these graphics and share our content.

ALS Facts

1.   What is ALS? Amyotrophic means “loss of muscle tissue” (myo = muscle). Lateral sclerosis means “hardening of the lateral funiculus through scar tissue, through which the pyramidal tracts descend".

2.   ALS is a disease that attacks cells in the body that control movement. It is a neurodegenerative disease, meaning cells of the nervous system die over time. In ALS, this makes the brain stop talking to the muscles, causing increased paralysis over time.

3.   The majority of people diagnosed with ALS have no family history of the disease. About 90 percent of ALS cases are sporadic, meaning the cause or causes are unknown.

4.   The life expectancy of a person with ALS averages about two to five years from the time of diagnosis.

5.   1 in 300 people are diagnosed with ALS in their lifetime.

6.   Every 90 minutes, someone is diagnosed with ALS, and someone passes away from it.

7.   U.S. military veterans are twice as likely to develop ALS compared to non-veterans. It’s unclear what about military service might trigger the development of ALS.

8.   Men are diagnosed with ALS slightly more frequently than women.

9.   One way ALS presents itself is limb onset. About two-thirds of cases begin in one of the limbs, usually the feet or hands. The most common symptom of limb onset ALS is muscle weakness without pain.

10. Another way ALS presents itself is bulbar onset.About one-third of cases start by affecting the muscles that control speaking, breathing, and/or swallowing.

11. French and British medical literature described the first symptoms of ALS in the 1830s. One of the earliest reported cases reported was in 1853 and it affected Prosper Lecomte, a circus owner. Jean-Martin Charcot, the “father of neurology,” came up with the term amyotrophic lateral sclerosis in 1874. Though it’s been over a century since ALS was identified, we still don’t have meaningful treatments or a cure.

12. ALS is always fatal. It affects at least 20,000 Americans every single year. The underlying cause of ALS—and the related conditions of Parkinson’s, Frontotemporal Dementia (FTD), and Alzheimer’s—remains uncertain to scientists.


Lou Gehrig Facts

1.   Lou Gehrig attended Columbia University on a football scholarship to study engineering. His second sport was baseball. It was at Columbia that Lou joined Phi Delta Theta Fraternity, who in 2017, helped establish the Live LikeLou Foundation in his honor.

2.   Lou Gehrig signed his first contract with the New York Yankees in April1923. Over the next 15 years, he led the team to six World Series titles and set the mark for most consecutive games played (2,130). He retired in 1939after his ALS diagnosis. Gehrig passed away from the disease in 1941.

3.   The Yankees made Lou Gehrig the first athlete to have their jersey number retired. 

4.   Following Lou Gehrig's retirement, Major League Baseball circumvented its own rules and immediately inducted the former Yankee into its Hall of Fame in Cooperstown, New York.

5.   Baseball’s greatest streak ended on a cloudy spring afternoon in theBronx, New York. Lou Gehrig, battling a slump and his weakened body due to ALS, played the 2,130th consecutive game of his career on April 30, 1939. It was his final game.

6.   Lou Gehrig retired from baseball in 1939 and months later accepted a job from New York City Mayor LaGuardia, to be a commissioner on the city’s parole board. He was sworn in for a 10-year term and proceeded to counsel inmates and help decide who should be released from prison. His declining health required him to take a six-month leave of absence in April 1941. He died two months later.

7.   On July 4,1939, Lou Gehrig delivered the famous line, “I might’ve been given a bad break, but I’ve got an awful lot to live for…” just weeks after his diagnosis of ALS.The disease kept the 36-year-old Hall of Famer from holding the trophies handed to him that day. His arms were weak, so he set them on the ground.

8.   Lou Gehrig’s mother was the cook at the Columbia University Phi Delta Theta Fraternity, where he lived, and ultimately was initiated as a brother.

9.   Lou Gehrig knew something was wrong with his arms. He wrote letters to Louisville Slugger asking for lighter and lighter bats before his ultimate diagnosis with ALS.

10. In the mid-1930s, Lou Gehrig was called out to Hollywood to screen test for the upcoming “Tarzan” movie. He was not cast because his legs were as big as a man’s waist! Tarzan was supposed to be scrawny, being raised on sticks, berries, and jungle fare. Lou thought the whole experience was hilarious!

11. LouGehrig’s legacy has inspired support for those living with paralysis for decades, starting with the first Lou Gehrig Memorial Fund, which funded a fleet of ambulances in New York City. And 80+ years later, we are still inspired and still doing this important work.

12. In 1934 Lou Gehrig achieved the Triple Crown of baseball, leading his league in batting average (.363),home runs (49), and runs batted in (RBIs; 165). Only 14 players have wonMajor League Baseball’s Triple Crown for batting.

Sources include various ALS organizations, published research, and LouGehrig history references.


Live Like Lou’s ALS Community Impact

1.   The Live LikeLou Foundation was founded in November of 2017 with a vision to leave ALS better than we found it by supporting families affected by ALS, funding ALS research to find treatments or cures forLou Gehrig’s disease, and honoring Lou Gehrig’s legacy.

2.   Live Like Lou has registered more than 470 ALS families since our inception and we aim to provide meaningful support to ALS families through hands-on-service, grants for home improvement projects related to accessibility, financial support for dependents to pursue higher education, and impactful opportunities for children.

3.   By the end of2023, the Live Like Lou Foundation will have funded $1 million in grants to emerging ALS investigators and institutions conducting ALS research since 2018. We aim to invest in people, places, and discoveries that will lead to tomorrow’s trials, treatments, and cures for ALS.

4.   We seek to amplifyLou Gehrig’s story, his legacy, and what it means to Live Like Lou in the face of the 100 percent fatal ALS diagnosis. We do this through partnerships, being active collaborators in the ALS community, and inspiring the next generation ofALS community champions and supporters.

5.   Live Like Lou’s founder, Neil Alexander, set our vision. InNeil’s last interview with a reporter before ALS took him from this earth, he was asked how he hoped his children would remember him. He knew that his efforts with Live Like Lou wouldn’t likely save his own life; but he did it for the next guy, gal, or family who heard the devastating news, “You have ALS.”Neil told the reporter that he hoped his children, Abby and Patrick, would remember that he left ALS better than he found it. From that, Live Like Lou’s vision was set.

6.   Live Like Lou’s founder, Neil Alexander, embodied the spirit of the word“onward” when he thought of his journey with Lou Gehrig’s disease. It signifies that we look to the future—a future without ALS—while continuing forward each day, despite the odds we face. Onward has become a signature statement for friends of Live Like Lou and its volunteer efforts to support ALS families.

7.    In March 2021, Major LeagueBaseball announced that Lou Gehrig Day would be celebrated annually on June 2.With the announcement, Lou Gehrig joined Jackie Robinson and Roberto Clemente as the only players to have a day reserved in their honor throughout the league. For those who have been affected by ALS and those who support and advocate for the disease, Lou Gehrig Day provides another major platform to strengthenLou Gehrig’s legacy. It also gives ALS families hope that heightened awareness and funding for this awful disease will bring progress for meaningful treatments or cures. Why is Lou Gehrig Day June 2? It is the day in 1925 that Gehrig began his record-breaking consecutive games streak (2,130), and later, the day the Iron Horse died in 1941.

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