CNN Shines Light on “Iron Horse Tour” of MLB Ballparks

Today, CNN featured a profile on Larry Falivena, a person living with ALS since 2017. Larry is visiting all 30 Major League Baseball parks in one season to raise awareness of ALS as part of The ALS Association’s Challenge Me campaign. He began his “Iron Horse tour” on May 30.

“If my time is truly limited, I want to use it the best way possible,” Larry said in his CNN interview. “So, the two thoughts in my head were: I want to do something with my family, and I want to do something that’s going to have an impact against ALS.”

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Challenge Me to Be the Face of ALS

Eighty years ago on July 4, Lou Gehrig gave one of the most famous speeches in American history. His speech marked his retirement from baseball because of his recent diagnosis of ALS. Gehrig was honored by many on the field that day, and his number 4 was retired, the first time a player had ever had his jersey retired. The New York Times called it “one of the most touching scenes ever witnessed on a ball field.”

In being public about his diagnosis, Gehrig raised awareness of a disease that was virtually unknown at the time. Yankees fans, as well as all baseball fans, and most Americans, now knew someone with ALS. His openness about the disease – in addition to his dominance on the ball field and his reputation as being a true gentleman – made him the face and name of ALS for decades to come.

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Challenge Me to Halt the Progression of ALS

By Stanley Appel, M.D.
Co-director, Houston Methodist Neurological Institute
Chair, Stanley H. Appel Department of Neurology

I call ALS “the nice guys’ disease.” For, as indiscriminate as it appears, ALS certainly has a way of finding the best and most courageous people to attack. Watching people endure the wasting of their muscle control and seeing them defiant in the face of the sure and steady loss of communication and independence, makes me defiant too. People with ALS fight the disease with great courage. Seeing the fire and determination of my patients inspires me every day. Our team puts that inspiration to work in the clinic and in my lab, where we are on a promising path to finding effective therapies to slow ALS.

The money you generated by accepting the ALS Ice Bucket Challenge has changed the treatment and care landscape for people living with ALS. It has funded groundbreaking research, giving the medical and pharmaceutical communities more insight into how ALS progresses. These discoveries help us narrow treatment targets that we can test in our labs – and in more clinical trials – in more places across the country. In fact, The ALS Association has been able to increase the number of Certified Treatment Centers of Excellence by 29 and Recognized Treatment Centers by 20. This makes better care more accessible to more people fighting ALS.

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Challenge Me to Find More ALS Genes

By John Landers, Ph.D.
University of Massachusetts Medical School

Furthering our understanding of disease and the creation of effective therapies won’t happen in a vacuum. My peers and colleagues in the medical research community know first-hand the necessity of global collaborations that bring diverse specialties into the process of understanding complex medical mysteries such as ALS.

A few months before the ALS Ice Bucket Challenge, my colleagues and I approached The ALS Association about investing in the work of Project MinE, a global research consortium focused on understanding the genetics of ALS. Although the Association had a deep interest in advancing work to understand the genetic factors associated with ALS, resources to participate in a significant way were constrained. Genetics research is expensive, and there simply was not sufficient budget to establish a Project MinE branch in the United States.

But gallons upon gallons of ice water later, everything changed.

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Challenge Me to Make the Impossible Possible

By Dexter Ang
Co-founder & CEO, Pison Technology

Watching my mother struggle to interact with the world as her ALS progressed was extremely difficult for our family, and for me personally. Her struggle inspired me to find solutions that could help people like my mother better interact with computers and their environment, even after they have lost almost all of their ability to move. I had the motivation to advance technology in a way that would bring a new quality of life to people living with ALS under Steve Saling’s motto that until medicine proves otherwise, technology is the cure.

Thanks to everyone who contributed to the Ice Bucket Challenge, funds were made available to my company when we won The ALS Association’s Assistive Technology Challenge in 2016. These funds were used to launch my company, Pison Technology, and take my ideas for assistive technology from concept into development. I am grateful every day for the millions of people who participated in the Ice Bucket Challenge and created a whole new environment for those of us working to empower people living with ALS to live more fulfilling lives.

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GUEST BLOG POST: The Promise of CuATSM for ALS and the Challenges of Moving from Mice to Humans

Note: The ALS Association was recently contacted by Dr. Joe Beckman, Ph.D., who had been following recent conversations online about CuATSM and wished to help provide further context about the compound and potential treatment. 

In 2016, my colleagues and I published some remarkable results of a new drug called CuATSM in a mouse model of ALS. Moving CuATSM from mice to humans is a long and difficult road that involves the cooperation and scrutiny of many people. The checks and balances are critical to balance the risks with the benefits of any new therapy. 

For several years, we have been overwhelmed with the patient requests from young mothers and fathers with kids and family members with parents who are anxious to try CuATSM and learn of any possible treatment. It is hard to convey the horror of this disease, and I understand their frustration. A good friend from my time in the Army 40 years ago has developed the disease. After 25 years of work on the disease, I feel I have failed so far. This disease is humiliating in its complexity. The one lesson I have learned is that there are no simple answers or short cuts. 

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Understanding the Impact of the Ice Bucket Challenge on The ALS Association’s Finances

The ALS Association has always been committed to transparency, including providing complete and accurate financial information on our website. We continue to receive the highest ratings from charity watchdog groups tasked with reviewing our spending, fundraising, and management.

The Ice Bucket Challenge generated $115 million for the national office of The ALS Association in 2014, which spurred a massive increase in the Association’s capacity to invest in promising research, the development of assistive technologies, and increased access to care and services for people with ALS. Since 2014, we have committed more than $131 million toward our mission, including over $89 million committed specifically to worldwide research collaborations.

Since that time, the Association has devoted a page on our website to provide a list of how those funds are being spent. You can always find that information by clicking on the “Ice Bucket Challenge Progress” button on our homepage, or you can view those investments here.

After the Ice Bucket Challenge in 2014, The ALS Association’s Board of Trustees determined that the best use of these proceeds was to immediately put them to work by increasing funding in our core mission areas. As a result, we doubled our operating budget, with most of the increase allocated to research and care service initiatives.

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