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ALS Association
Here’s Why the ALS Registry and Biorepository Matters
The National ALS Registry and Biorepository was created back in 2007 to help understand how prevalent ALS is, who is developing ALS, and what the possible causes are. Its mission is also to help support researchers in discovering treatments and cures and in preventing ALS.
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ALS Association
Q&A: How Amylyx NDA Announcement Moves the Fight for Access to AMX0035 Forward
After Amylyx’s announced that it intends to file a new drug application for AMX0035, The ALS Association immediately called on the U.S. Food and Drug Administration to approve the treatment for all people with ALS as soon as possible. Connecting ALS talked to the team at Amylyx to learn about the path ahead for access to AMX0035.
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Massachusetts Chapter
From the Desk of the Executive Director: Join Us for Our 2021 Walks and Ride to Defeat ALS
Executive Director John Hedstrom of The ALS Association Massachusetts Chapter pens a letter to the Massachusetts community offering thanks for support throughout the trials of 2020 and urges participation in the Chapter's 2021 event season. His letter also details how folks can attend the Walk to Defeat ALS either in person or virtually.
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ALS Association
Fiscal Stewardship During A Global Pandemic
For nonprofit entities like The ALS Association, the filing of its Form 990 tax return is also an important tool to communicate the good stewardship and judicious financial management the Association has demonstrated while working toward its mission of creating a world without ALS.
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ALS Association
This Is What It Takes
We are on an urgent mission to make ALS a livable disease by 2030, to discover and fund promising treatments and to discover a cure. Our best opportunity to fulfill this promise and to continue delivering in the areas of Care, Advocacy, and Research is to reinvigorate our commitment to work as one. Driven by this belief, we will move from a federated to a unified structure.
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ALS Association
Health Disparities and ALS
Investigators at Emory University School of Medicine reviewed 23 years of data from 1997-2020 for patients seen at the Emory ALS Center. To allow for adequate analysis of disease survival time, researchers included all patients who self-reported their race as Black or White and symptom onset was before January 1, 2017. A total of 1,298 patients were included in the study, 203 of whom were Black, and 1,095 of whom were White.
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Northern Ohio Chapter
How Does ALS Affect My Life?
This is a personal statement read by Jennifer Bernay on the 2021 virtual hill day held with the ALS Association Northern Ohio Chapter and members of congress representing the state of Ohio.
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Massachusetts Chapter
From the Desk of the Executive Director: May 2021
Executive Director John Hedstrom of The ALS Association Massachusetts Chapter discusses how the efforts of the Chapter compliment May as ALS Awareness Month. This month's letter from our chapter's executive director outline exciting details about coming programs, COVID-19 policy updates, event developments, and advocacy initiatives.
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Massachusetts Chapter
From the Desk of the Executive Director: April 2021
Executive Director John Hedstrom of The ALS Association Massachusetts Chapter offers a comprehensive update about the goings on with local events, care services, and the promise that April brings for the entire Commonwealth.
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Massachusetts Chapter
From the Desk of the Executive Director: March 2021
On the one year anniversary of COVID-19 shutting down the world, Executive Director John Hedstrom of The ALS Association Massachusetts Chapter pens a letter to update the local community on the Chapter's ambitious goals and an exciting new event.
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ALS Association
One Man’s Story About Why He Joined the Fight Against ALS
Through word of mouth, Stuart and his wife Marcia found five or six families in their community who were also dealing with the impact of an ALS diagnosis. They started an informal support group. The group started working with the chapter relations team at The ALS Association and formed The ALS Association Alabama Chapter.
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Massachusetts Chapter
From the Desk of the Executive Director: January 2021
John Hedstrom, Executive Director of The ALS Association Massachusetts Chapter, greets the Massachusetts ALS community with a Happy New Year and robust plans for the Chapter at the start of 2021.
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ALS Association
Easy Chew Easy Swallow Recipes to Help Celebrate the Holidays
Once ALS takes away a person’s ability to swallow safely, maintaining adequate nutrition can become a challenge for people living with ALS and their caregivers. And finding delicious family friendly recipes for all to enjoy during the holidays can be difficult.
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