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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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ALS Association
We Can't Wait Action Meeting with FDA: What We Heard and What's to Follow
We are  deeply grateful to the eight speakers who shared their wisdom and personal experience with the FDA,  as well as the  more than 150 others from the community  who have done so  online. We continue to hear that people with ALS want effective treatments now, even if they offer modest benefit, and are willing to face considerable uncertainty and risk to do so.
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ALS Association
ALS Association to Host FDA, Industry in “We Can’t Wait” Action Meeting
Later this month, the ALS Association will host a virtual session focused on the urgent need for timely access to new therapies. Leaders from the U.S. Food and Drug Administration (FDA) and industry companies will listen to people living with ALS speak directly about their expectations for their experiences with the disease and how important it is to have timely access to therapies that have the potential to provide incremental benefit in improving how people feel, function and live.
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ALS Association
Dr. Jan Veldink Receives 2021 Sheila Essey Award
Dr. Jan Veldink is receiving the award in recognition of his contribution to ALS epidemiology and genetics which have led to important novel discoveries including several new ALS risk genes. He has established a research line on ALS genetics, epidemiology and transcriptomics and has a proven track record in both array-based and sequencing technology. In addition, he has established an international biobanking register and patient database specifically for ALS, which is essential to be able to carry out Project MinE.
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ALS Association
Reasons for Hope in ALS Research with the Discovery of NU-9
In a study funded in part by The ALS Association’s TREAT ALS program, researchers from Northwestern University have identified the first compound (NU-9) that eliminates the ongoing degeneration of diseased upper motor neurons, a key contributor to ALS. While this news is exciting, this study has only tested the compound in mice and in laboratory neurons and is in the very early stages.
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ALS Association
What ALS Focus Hopes to Learn from ALS Caregivers
ALS Focus recently launched its third survey, gathering data from ALS caregivers to identify the unique needs and challenges of ALS caregiving. Responses to this survey will help translate the caregiver experience into action and influence ALS programs and policy decisions. ALS Focus Director Dr. Sarah Parvanta detailed the questions her team is asking in the current survey during a recent episode of Connecting ALS. A portion of that conversation has been edited and condensed below.
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ALS Association
Biogen Shares Latest Updates on ALS Clinical Trials
Despite the many challenges caused by COVID-19 this past year, ALS research made strides toward finding effective treatments for ALS. As 2020 winds down, we wanted to share an update from our partners at Biogen on some of their ongoing research projects.
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ALS Association
AMX0035 Petition Delivered to FDA
The ALS Association and I AM ALS on Friday submitted a petition to the Food and Drug Administration calling on the agency and Amylyx Pharmaceuticals to act swiftly and with urgency to make AMX0035 available as soon as possible. The petition was signed by more than 50,000 people from across the country who have been affected by ALS.  
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ALS Association
AMX0035 Survivability Data Adds to Urgency to Make Drug Available
Clinical trial participants who took AMX0035, a promising new drug therapy developed by Amylyx, showed a statistically significant 6.5 month increase in survivability compared to patients who did not receive the drug in the initial trial, according to data published in the journal Muscle and Nerve in October 2020. These findings validate calls led by The ALS Association and I AM ALS for Amylyx and the FDA to make AMX0035 available as quickly as possible. 
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ALS Association
Jinsy Andrews: ALS Researcher in Search of a Cure
ALS doesn’t stop and neither do we. The reality is, people living with ALS can’t wait for treatments and a cure, and just as importantly, the tireless researchers working together around the world can’t wait to make the next breakthrough. 

Meet Jinsy Andrews, M.D., MSc, FAAN, Director of Neuromuscular Clinical Trials at Columbia University, and member of The ALS Association Board of Trustees. Dr. Andrews is a clinical neurologist, neuromuscular specialist, and an ALS specialist. 
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