ALS Association Contributes $3.3 Million to Fund Groundbreaking Genome-Sequencing Database

A global, centralized, cloud-based repository of ALS genetic data is being assembled with funding from The ALS Association. This is the first such repository of its kind.

Much of the research aimed at finding a cure for ALS is in the area of genetics. Such work requires genomic sequencing, a process whereby individuals’ genes are mapped in a way that can be compared to the genes of others who do not have ALS in an effort to identify variations that may be factors in the development or progression of disease. 

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High School Students Spread Awareness and Raise Money for ALS Research

When the Biology Honors class kicked off a special course to learn more about neurological diseases, they turned it into a unified effort to educate their community and raise over $3,000 for ALS research.

The ALS Association spoke to some of the folks behind the project. 

It all began with a partnership between Great Valley High School, the Live Like Lou Center for ALS Research at the University of Pittsburgh Brain Institute, and the Beating the Odds Foundation, a Pennsylvania nonprofit that encourages kids to achieve success in school and in life.  At the beginning of the last school year, starting in September 2018, the students took a special honors course written and led by Kathleen Crisi and Christina Medvec, who are biology teachers at Great Valley High. 

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How ALS Association Advocates Boosted Congressional Funding for ALS Research

Last week Congress passed, and the president signed, a continuing resolution that will fund all federal programs at current levels through November 21. Before the continuing resolution expires, Congress must either pass full appropriations bills for the 2020 fiscal year or pass another continuing resolution. 

Now that a government shutdown has been averted until just before Thanksgiving, it is worth reflecting on the hard work and success The ALS Association and its advocates have had in securing funding for ALS research and to look ahead to what’s next.

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The ALS Association Updates Terms of Service to Ensure Social Media Serves to Help Advance Our Mission

Social media channels are important and powerful tools to advance our shared mission to “discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.”

However, when people use social media platforms to actively spread misinformation and personal attacks, or threaten violence, they harm all of us – and especially people with ALS and their families. There is too much at stake to allow the bullying and negative attacks of a few individuals to harm progress toward finding treatments and a cure. 

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