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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Challenge Me to Revolutionize the Treatment of ALS

By Don Cleveland, Ph.D.
Ludwig Institute for Cancer Research, University of California, San Diego

There was a lot of skepticism in the research community when we proposed development of designer DNA drugs as a way to treat ALS. This therapy is an approach that uses DNA-based designer drugs to “silence” genes that are known to cause a particular disease. The ALS Association was the first funding organization to invest in designer DNA technology research and development for therapy in neurodegenerative disease.

The ALS Association, from the beginning to the present, has been the boldest supporter of designer DNA drug technology and its support has been transformative for the development of promising new therapies. With ALS Ice Bucket Challenge donations, generated by people like you, the Association has been able to double down on its investment in designer DNA drugs. These include trials underway for the two most common genetic causes of ALS, mutation in the SOD1 or C9orf72 genes. Designer DNA drugs to silence either of those genes are now in clinical trials and we’re encouraged by the data gathered thus far. Ice Bucket support also enabled identification of new gene targets that are affected in essentially all ALS patients and that are ideal targets for designer DNA drugs.

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What People With ALS Want You to Know About ALS

Challenge Me to Educate the World About ALS

We launched the Challenge Me campaign last week. Challenge Me picks up where the ALS Ice Bucket Challenge left off. This time, we are challenging the world to do anything and everything they can to help end ALS.

“Challenge Me” is a concept well known to people living with ALS who face an insidious foe every single day. Pat Quinn, who co-founded the ALS Ice Bucket Challenge with Pete Frates in 2014, talks about affirming his readiness to take on whatever ALS may throw at him that day. He says “Challenge Me” captures the spirit and determination of people with ALS.

We asked some other folks in the ALS community what they want you to know about ALS. Here is what they said.

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