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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11 Ways to Maintain Nutrition in People with ALS

National Malnutrition Awareness Week kicks off today. The ALS Association has resources available to help make sure people living with ALS do not struggle with malnutrition as the disease progresses. 

Adequate nutrition can become a critical concern for people living with ALS and their caregivers. Once ALS takes away a person’s ability to swallow safely, placement of a PEG (through the abdomen) feeding tube provides a viable option to maintain adequate nutrition. 

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ALS Association Thanks Community Following FDA Release of Final Guidance Document

On Monday, the Food & Drug Administration (FDA) issued a finalized ALS Drug Development Guidance for Industry. This is one important step in comprehensive efforts to bring therapies to people with ALS more quickly. Five years ago, there was no clarity around what the FDA expected from companies pursuing ALS treatments. The ALS Association recognized this problem, galvanized the broader community, and engaged the FDA to provide a clear roadmap that also can respond to new science as it emerges. The FDA Guidance is one part of a commitment that will not be complete until we have a cure for all people with ALS. 

The ALS Association is in the process of carefully reviewing the final guidance document. We are grateful to people with ALS and their caregivers who have contributed to this process and we thank the FDA for incorporating this input, as well as recognizing the devastating impact of ALS. 

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Inaugural Class of the Jane Calmes ALS Scholarship Fund Hails from 25 States

The ALS Association has awarded $225,000 in scholarships to 45 inaugural recipients of the Jane Calmes ALS Scholarship Fund. The Fund provides financial support to students impacted by ALS.

The first cohort of Fund scholars will receive $2,500 each semester for a total of $5,000 per year in support of post-high school education. Awards are renewable for up to three years or until a bachelor’s degree is earned or graduation is achieved.

Mark Calmes, vice-chair of The ALS Association National Board of Trustees, established the fund in honor of his wife Jane, who lived with ALS for eight years until her passing in August 2017.

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A New Study Supported by The ALS Association May Provide a Novel Therapeutic Strategy for ALS

Research funded by The ALS Association found that defects in the mechanism that transports proteins and RNA between the nucleus and cytoplasm of cells within the human body may lead to ALS and that regulation of those systems could present a novel therapeutic strategy for ALS. 

Details of the study are provided in a new paper entitled, “Modulation of actin polymerization affects nucleocytoplasmic transport in multiple forms of amyotrophic lateral sclerosis,” which was released August 23, 2019, in the journal Nature Communications

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