Challenge Me to Find the Path to a Faster Diagnosis of ALS

By Neil Thakur, Ph.D
Executive Vice President, Mission Strategy
The ALS Association

Diagnosing ALS is a lengthy and frustrating process for clinicians and families alike. This is due in large part to the absence of a specific biological indicator, which would signal the presence of the disease in people experiencing the onset of ALS symptoms. Unlike cancer and diabetes, which can be diagnosed and monitored through laboratory tests,  ALS has no unique biological markers to confirm an ALS diagnosis.

With funds raised through the ALS Ice Bucket Challenge, The ALS Association has been able to invest significantly in the identification of biological indicators (or biomarkers) for ALS. You may already be familiar with biomarkers in other diseases, like blood sugar for diabetes or cholesterol for heart disease. Biomarkers can help us diagnose ALS more quickly and monitor disease progression precisely. With biomarkers, we can run faster and smaller clinical trials, because they can help us select participants more precisely and measure clinical changes more accurately.

One example of promising biomarker research being done today is happening at Dr. Tim Miller’s lab at the Washington University School of Medicine in St. Louis. With funding generated in part through the ALS Ice Bucket Challenge, Dr. Miller and his team are looking to develop a unique imaging biomarker to track TDP-43, a protein associated with almost all cases of ALS. I’d like to introduce you to Dr. Miller, who can tell you, in his own words, about the push to find biomarkers that can help people with ALS find effective treatments sooner.

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Challenge Me to Live Life to the Fullest

How I Embrace the ALS “Challenge Me” Campaign

By Noel Levasseur
Person living with ALS

Five years ago, I joined millions of people around the world and took the ALS Ice Bucket Challenge. The Challenge took America by storm and fueled the biggest social media movement in history. At least 17 million people uploaded videos to Facebook to raise awareness and donate to ALS research, and over $115 million was raised for The ALS Association. 

At the time, many of us who took the Challenge knew little about ALS, myself included. I personally had no idea, other than Lou Gerhig had died from it. We also had no idea about the challenge ALS had in store for us. 

Three years after taking the Ice Bucket Challenge, in November of 2017, I was diagnosed with ALS. My life was forever changed. Trust me when I tell you, an ALS diagnosis changes everything in the blink of an eye. Every day moving forward, I would now face the biggest fight of my and my family’s life! A cruel disease with no cure… ALS. 

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Challenge Me to Stop ALS Before it Starts

By Sandrine Da Cruz, Ph.D.
Ludwig Institute for Cancer Research,
University of California, San Diego

One of the most significant results of the ALS Ice Bucket Challenge is the synergy it created in the ALS research community. The increase in funds the Challenge made available to research not only created more fundamental knowledge about ALS, it also spurred many global collaborations that further our capacity to identify targets and advance therapies.

ALS is an incredibly complex disease and it will take a community of researchers from all around the world to fully solve the puzzle. Joint research, cooperation and data-sharing have brought experts from diverse scientific fields together to contribute to comprehensive knowledge-building around the disease.

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Challenge Me to Broaden the Global Fight Against ALS

By Hemali Phatnani, Ph.D.
Director, Center for Genomics of Neurodegenerative Disease
New York Genome Center

Collaboration is critical to scientific research, which is why the Ice Bucket Challenge was so transformational to ALS research, particularly in the field of genomics.

When researchers are disconnected from each other, their research remains largely isolated, and science advances more slowly. When researchers frequently collaborate, they create networks that facilitate data-sharing and the exchange of ideas, enabling new approaches and technologies to emerge and spread more quickly and for the best ones to ultimately flourish.

This is particularly true in the field of genomics. The Ice Bucket donations have helped to support the infrastructure of the New York Genome Center’s Center for Genomics of Neurodegenerative Disease, which serves as an organizing hub of ALS data collection and analysis within the research community.

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Challenge Me to Finish What Was Started

On July 15, 2014, a small gesture of support by professional golfer Chris Kennedy on behalf of a family member living with ALS, went unnoticed by all but a few of his social media followers. Calling out his cousin Jeanette Senerchia of Pelham, NY, in support of her husband Anthony, Kennedy dumped a bucket of ice water on his head and challenged his network to either follow suit or make a donation to fight ALS. It was not until months later that the significance of his Facebook post would be credited as the start of the largest movement in medical history: The ALS Ice Bucket Challenge.

Chris Kennedy could not have foreseen the impact of his post. Senerchia accepted his challenge, posted her video and in turn, challenged her network to get drenched or make a donation to The ALS Association. Pat Quinn, a young man newly diagnosed with ALS in Yonkers, NY, took the challenge and passed the torch to Pete Frates of Beverly, MA, a former Boston College baseball player and team captain who was diagnosed with ALS at age 27. Frates’ involvement led to participation by Boston’s athletic community, where it immediately caught fire among the city’s professional athletes. The Red Sox, Bruins and Patriot athletes who took the challenge called on competing teams and celebrities to get involved. Before the summer was through, nearly every major sports team and celebrity A-listers such as Oprah, Jimmy Fallon, and Lady Gaga were posting their own ALS Ice Bucket Challenge social posts.

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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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