News & Stories

January 2024 Research Updates

Our mission at ALS United Mid-Atlantic includes uniting and empowering the ALS community through a collaborative approach to fostering bold research initiatives. Every aspect of our work is dedicated to advancing our mission of discovering effective treatments and ultimately eradicating ALS. This underscores the critical importance of funding exceptional ALS research.

Please read and share the latest in ALS research and learn how ALS families can be empowered through ongoing research studies.

ALS Center is the First in the Nation to Offer Patients a New Interventional Clinical Study

Hackensack Meridian Neuroscience Institute at Jersey Shore University Medical Center’s ALS Center is the first ALS care provider in the United States to offer patients a new interventional clinical study. The study DAZALS is from Corcept Therapeutics, and is a Phase 2, multicenter, 198-patient, randomized, double-blind and placebo-controlled study evaluating safety and efficacy of dazucorilant, an investigational treatment, in patients with Amyotrophic Lateral Sclerosis (ALS). Individuals with an ALS diagnosis, who are interested in participating in this clinical study, should call 732-776-3307.  

Familial conference:
Uncovering the Genetics of FTD/ALS

The Penn Frontotemporal Degeneration (FTD) Center is excited to open registration for our fourth annual familial conference, Uncovering the Genetics of FTD/ALS, on Wednesday, February 21st, 3:00 to 6:00 PM EST. Please register by visiting . This event will take place virtually and the link will be provided once you’ve registered.

Engage with NINDS/NIH by Sharing
Your ALS Lived Experience

The National Institute of Neurological Disorders and Stroke (NINDS), seeks to include people with lived experience of neurological disorders in the planning, execution, and communication of research.

People with lived experience of neurological disorders includes those who are: diagnosed, at risk, caregivers and loved ones, and those who have lost loved ones to ALS.

As part of that effort to include people with lived experience in the conversation, design and decision making of research, we routinely reach out to people with experience of specific neurological disorders to ask for self-nominations to join working groups, planning committees, advisory groups, and other projects. These groups often include a diverse representation of clinical, translational, and basic science experts, non-profit and advocacy organizations, as well as people with lived experience.

We are seeking to grow our network of people with lived experience of ALS to provide an opportunity to share perspectives and to join in conversations and potential working groups.  If you have not already joined our list and would like to, you may join by providing some general background and contact information in the following form:  This is a general NINDS engagement form not specific to ALS. If you have questions about the form or if it does not work with your assistive tech, please contact for an alternative.

National ALS Registry:
Learn How You Can Join the Fight Against ALS

Join the ALS Community for an educational webinar on Thursday, January 25th, at 4:00 PM EST to learn about the National ALS Registry featuring Paul Mehta, MD.

The National ALS Registry is a multi-faceted research platform. Launched in 2010, the Registry evaluates the public health burden of ALS by determining who has ALS in the United States as well as investigating the causes and risk factors for this disease. The Registry also connects persons with ALS with clinical trials and epidemiological studies, funds research domestically and globally, and has a biorepository (i.e., National ALS Biorepository) where persons with ALS can donate their blood and saliva for research. This webinar will inform and educate persons with ALS and caregivers the importance of joining and being counted. Persons with ALS are the heart of the National ALS Registry and their data allows researchers to gain insight and advance research on genetics, biomarkers, and environmental exposures. With your help, we can potentially determine what causes and implement prevention measures in the future.

Whether you are living with ALS, are a caregiver or family member of somebody with ALS, or you have direct experience with research, we want to share and highlight your perspective on all aspects of ALS research.

This month, we shared thoughts from John Russo, a person with ALS from New Jersey who has been active in many ALS research studies. John has participated in clinical trials, national research groups, and many advocacy efforts. 

To add your thoughts on ALS research, please email

This educational session empowers patients and their caregivers to learn more about ALS and treatment options. Topics covered include:
•    The efficacy and safety of RADICAVA ORS®
•    How to take this oral treatment
•    Talking to your doctor about RADICAVA ORS®
•    Steps you can take to start treatment
•    What to expect during your treatment journey
•    The importance of staying on treatment as prescribed
•    How the Share Your Story program helps people tell their experiences with ALS and RADICAVA®

RADICAVA and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis (ALS).
Do not receive RADICAVA (edaravone) or RADICAVA ORS (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA and RADICAVA ORS.
Before you take RADICAVA or RADICAVA ORS, tell your healthcare provider about all of your medical conditions, including if you:
     •    have asthma
     •    are allergic to other medicines.
     •    are pregnant or plan to become pregnant. It is not known if RADICAVA or RADICAVA ORS will harm your unborn baby.
     •    are breastfeeding or plan to breastfeed. It is not known if RADICAVA or RADICAVA ORS passes into your breastmilk. You and your healthcare provider should decide if you will receive RADICAVA or RADICAVA ORS or breastfeed.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
What are the possible side effects of RADICAVA and RADICAVA ORS?
RADICAVA and RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions.
     •    Hypersensitivity reactions have happened in people receiving RADICAVA or taking RADICAVA ORS and can happen after your medicine has been given.
     •    RADICAVA and RADICAVA ORS contain sodium bisulfite, a sulfite that may cause a type of allergic reaction that can be serious and life-threatening. Sodium bisulfite can also cause less severe asthma episodes in certain people. Sulfite sensitivity can happen more often in people who have asthma than in people who do not have asthma.
     •    Tell your healthcare provider right away or go to the nearest emergency room if you have any of the following symptoms: hives; swelling of the lips, tongue, or face; fainting; breathing problems; wheezing; trouble swallowing; dizziness; itching; or an asthma attack (in people with asthma).
Your healthcare provider will monitor you during treatment to watch for signs and symptoms of all the serious side effects and allergic reactions.
The most common side effects include bruising (contusion), problems walking (gait disturbance), and headache.
These are not all the possible side effects of RADICAVA or RADICAVA ORS. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to or Mitsubishi Tanabe Pharma America, Inc. at
Please see full Prescribing Information and Patient Information.

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