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239 results
ALS Association
Researcher Spotlight: Janani Parameswaran, Ph.D.
We talked with Dr. Janani Parameswaran, postdoctoral fellow from Dr. Jie Jiang’s lab at Emory University in Atlanta, to learn more about her and her ALS research focused on unraveling the underlying disease mechanism.
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ALS Association
Dear FDA: Please Grant Priority Review to AMX0035 and Approve It
We asked the FDA to treat the approval review process of AMX0035 with urgency. Specifically, we sent a letter to FDA asking the agency to conduct a Priority Review of Amylyx’s New Drug Application (NDA) for AMX0035 and then approve it. The Priority Review is an expedited review process, as opposed to the Standard Review process, which can take upwards of a year after the agency accepts submission of the NDA.
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ALS Association
Researcher Spotlight: Caroline McHutchison
We talked with Dr. Caroline McHutchison, postdoctoral fellow from the University of Edinburgh, to learn more about her research focused on examining the presence, onset, and evolution of cognitive and behavioral symptoms, relative to motor symptom onset and diagnosis of ALS.
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ALS Association
Amylyx Files NDA for AMX0035
Amylyx recently filed a New Drug Application for AMX0035, a promising new drug that has proven safe and effective at slowing progression of ALS and extending the life of people living with the disease. The ALS Association has called on the FDA to approve the application with urgency.
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ALS Association
Q&A: How to Begin a Discussion Around Genetic Counseling and Testing
The ALS Association believes that upon diagnosis, people living with ALS/MND and their families must have the right to access genetic counseling and testing, current education about clinical genetics in ALS/MND and safeguards against genetic discrimination. Thanks to a sponsorship from Biogen, the diagnostic company Invitae is offering genetic testing and post-test counseling to people with ALS and their families at no charge.
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ALS Association
Researcher Spotlight: Marion Sommers-Spijkerman
We talked with Dr. Marion Sommers-Spijkerman, postdoctoral fellow from the Netherlands, to learn more about her research focused on developing and evaluating a guided web-based self-compassion intervention aimed at reducing self-stigma in people living with ALS and their primary caregivers.
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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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ALS Association
Case of AMX0035 Proves Advocacy from ALS Community Can Impact Drug Development
There is a lot to do, and this grounded focus of making ALS livable helps us hold everyone—ourselves, the FDA, and the research community—accountable to real impacts on real people with ALS and the time it takes to deliver those impacts. This week has been a big step forward for the ALS community, and we will continue urgently working to keep the momentum going.
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ALS Association
Researcher Spotlight: Yichen Li, Ph.D.
We recently talked with Dr. Yichen Li, postdoctoral fellow from the Ichida Lab at the University of Southern California to learn about her unique project focused on the efficacy of suppressing a gene called SYF2 as a therapeutic strategy for diverse forms of ALS. 
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ALS Association
New Potential Therapeutic Target Identified in CHMP7
Dr. Jeffrey Rothstein, professor of neurology and neuroscience and the founding director of the Robert Packard Center for ALS Research at Johns Hopkins University School of Medicine, and Dr. Alyssa Coyne, a postdoctoral fellow at Johns Hopkins, discuss their recent publication of research identifying a cellular defect common in ALS and what it means for research into the disease going forward.
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ALS Association
Researcher Spotlight: Nishal Shah, Ph.D.
We recently spoke with Nishal to learn more about him and his unique project focused on providing an assistive communication device for people with severe speech and motor impairment due to ALS using an intracortical Brain Computer Interface (iBCI).
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ALS Association
Understanding the Genetics of ALS May Be a Key to Prevention
As part of this year’s National Advocacy Conference, Dr. Bryan Traynor, senior investigator and chief of neuromuscular diseases at the NIH’s National Institute on Aging presented a case study to the ALS community to help better understand what we know today and what we are working toward for the future relating to genetics and prevention. ALS prevention has not only been a priority for Traynor, but for the ALS community at large.
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ALS Association
Researcher Spotlight: Lauren Gittings, Ph.D.
Dr. Lauren Gittings, whose award was made possible directly through funds provided by The ALS Association Oregon and SW Washington Chapter, is a postdoctoral fellow from the Sattler Lab at the Barrow Neurological Institute in Phoenix, Arizona. We recently spoke with Lauren to learn more about her and her unique project focused on identifying cellular and molecular changes that underlie cognitive impairment in ALS patients carrying the C9orf72 (C9) repeat expansion mutation.
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ALS Association
Researcher Spotlight: Sonia Vazquez-Sanchez, Ph.D.
We recently talked with Dr. Sonia Vazquez-Sanchez, postdoctoral fellow from the Cleveland Lab at the Ludwig Institute for Cancer Research at the University of California at San Diego to learn about her unique research focused on RNA binding protein TDP-43 and its effects on ALS.
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ALS Association
Our Response to the FDA’s Latest Letter and What We’re Doing to Keep Up the Pressure
Following our We Can’t Wait Action meeting with the FDA, we sent a letter to the agency asking it to reaffirm its commitment to the 2019 ALS Guidance and provide us with a detailed report showing how it has implemented the guidance. This week, the ALS Association received a response from Dr. Patrizia Cavazzoni, Director of the Center for Drug Evaluation and Research.
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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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ALS Association
ICYMI: We Can’t Wait Action Meeting Pushes FDA on Access
People with ALS on Tuesday called on the FDA to use its existing authority and the flexibility it promised the ALS community it would use to make experimental drugs that show incremental benefits available as quickly as possible. The comments came in a “We Can’t Wait” Action Meeting with FDA organized by The ALS Association.
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