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.

We’ve formed a global ALS Consortium that now includes more than 30 member institutions in five countries. The result is ALS data sharing on an unparalleled and unprecedented scale, empowering an integrated approach to working toward new treatments and more effective therapies. To date, over 3,000 genomic and clinically annotated samples from ALS patients have been sequenced and analyzed, and this dataset, one of the largest cohorts in the world, is available to all researchers.

Prior to the Ice Bucket Challenge, a researcher might have had access to a few hundred samples that could inform their work. Now, because of the enhanced collaboration made possible by Ice Bucket Challenge donations, that researcher can easily access several thousand samples – which can all be analyzed together.

That’s why I say the Ice Bucket Challenged revolutionized the way we approach ALS genomics. That funding launched many projects that can work in concert with one another, linking up studies that otherwise would have been done in isolation.

And we’re not just talking about research across the country. We’re talking about collaborative research happening around the world. All because of Ice Bucket money.

But our challenge is not over. It’s critical that we keep the momentum going. That’s why I challenge myself every day to foster more collaborations, strive for more and more ALS samples to sequence, analyze, and make available to the scientific community. It is through these collective efforts that we are creating a platform for scientific inquiry that can lead to breakthrough discoveries.

The Challenge Me campaign picks up where the ALS Ice Bucket Challenge left off. This time, the ALS community is challenging everyone to do anything and everything they can to cure ALS. Click here to learn more.

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