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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The ALS Association Announces Two New Research Funding Opportunities

The ALS Association is inviting researchers to submit proposals for its Managing ALS Research Program and The 2019 Lawrence and Isabel Barnett Drug Development Program. Applicants are encouraged to apply no later than October 7, 2019.

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Results from Our ALS Community Survey

The ALS Association is pleased to share results from our recent community survey. We were interested in hearing about programs and services that people reported as being important, reasons why people were not accessing some programs, major challenges, and issues around medications. Information gained from the survey will be incorporated in to care services planning activities and will be used to inform strategic planning, priority setting, program outcomes, and program improvements. 

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Principles for Urgent, Patient-Centered ALS Clinical Trials Latest in Ongoing Effort to Improve Trial Design

The ALS Association is deeply committed to accelerating the development of novel ALS therapies and ensuring they are accessible to those who need them. The Association is announcing today its latest strategic action with the release of Principles for Urgent, Patient-Centered ALS Clinical Trials: a series of recommendations to clinical trial sponsors and regulatory bodies worldwide. 

The Principles set out a clear framework for the design and conduct of ALS clinical trials that are efficient, impactful, and respectful. We view them as essential to both maximize the participation of people with ALS and their caregivers and to ensure every available tool is used to streamline drug development and regulatory-review processes. Regardless of the detailed specifics that may arise from FDA guidelines in the next few weeks, we hope these principles can help focus trial sponsors and regulators on the most important aspects of trial design and lead to ever-improving clinical trials as our fight against ALS advances. 

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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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ALS Advocates Take Action During Congressional Recess

With Congress home for the August recess, The ALS Association is redoubling its efforts to build upon momentum toward achieving a long sought policy goal – the elimination of a five month waiting period for Social Security Disability Insurance. 

During the summer recess, ALS Association chapters are focused on completing in-district meetings with members of Congress who have not already cosponsored the ALS Disability Insurance Access Act and urging them to support this bill. By increasing the number of cosponsors on this bill, we increase the chances of passing the bill before the end of the 116th Congress. 

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