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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Frequently Asked Questions (FAQ) about Our Research Program, Experimental Therapies, and More

To help provide more information about our research program, our spending decisions, our approach to certain experimental therapies, and other matters, we have put together the below Frequently Asked Questions. 

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AB Science Publishes the Positive Phase 2/3 Clinical Trial of Masitinib in ALS

AB Science has completed a Phase 2/3 human clinical trial of masitinib in ALS with promising results. The company published the results of its trial, conducted in Spain, in the journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. A confirmatory Phase 3 study will be launched later in 2019 with all locations yet to be announced. 

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The ALS Association, ALS Finding A Cure, and MDA Co-Fund Clinical Trial Grant to Study Restoring Immune System Function to Treat ALS

The ALS Association, ALS Finding a Cure (ALSFAC), and MDA announced they have jointly awarded a clinical trial grant totaling more than $2.5 million over two-and-a-half years to leading investigators at the Houston Methodist Neurological Institute and Massachusetts General Hospital. The principal investigator is Stanley Appel, MD, co-director of Houston Methodist Neurological Institute, chair of the Stanley H. Appel Department of Neurology and the Peggy and Gary Edwards Distinguished Chair in ALS at Houston Methodist Hospital, and professor of Neurology at Weill Cornell Medical College. Dr. Appel is an internationally renowned researcher and neurologist and is one of the country’s foremost experts on amyotrophic lateral sclerosis (ALS), a progressive neuromuscular disease that destroys muscle-controlling nerve cells called motor neurons, eventually causing muscles to become nonfunctional.

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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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Orphazyme Clinical Trial Hits Full Enrollment

Orphazyme has fully enrolled its Phase 3 clinical study of arimoclomol in amyotrophic lateral sclerosis (ALS). The Danish biopharma company hit full enrollment ahead of schedule due in large part to the efforts of the global ALS community who put out the word to people living with ALS. 

When proteins become misfolded during cell stress, they clump together (or aggregate) causing toxicity and cell death. Protein misfolding and aggregation in motor neurons are important contributors to the disease process in ALS.

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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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