Clinical Research Week: Your Path to Advancing ALS Research

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Participating in ALS research is a powerful way to help advance new treatments, improve care, and bring us closer to a cure. By enrolling in a research study, your time, experiences, and insights directly contribute to making ALS a livable disease for everyone, everywhere.

If you’ve ever thought about participating in research or are just hearing about it for the first time, we hope you will join us for Clinical Research Week, a weeklong series of free webinars happening daily from January 27 to January 31, at 3:00 p.m. EST.

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Research Vial that says "For Clinical Trial Use Only"

This special series is your opportunity to learn about the latest in ALS research and how people living with ALS, their loved ones, and caregivers can get involved to help shape the future of ALS treatments and care. Each session focuses on an essential aspect of research and offers actionable insights for everyone in the ALS community.

“In various support groups and educational programs, one of the topics that kept getting brought up was access to research and clinical trials,” said Ryan Tappe, a specialist in education with the ALS Association.

The ALS community wants more information on what research is being conducted and how they can access and participate in that research.”

The series is an opportunity to hear directly from people on the front lines of ALS research. “All the presenters have been working extensively with the ALS community for years and are passionate about their work,” Ryan said. Presenters include physicians, ALS Association staff, and people living with ALS.

By bringing together leading experts and advocates, Clinical Research Week offers a comprehensive look at ALS research today—and what lies ahead. The schedule features five engaging webinars, each designed to connect you with valuable resources and opportunities:

  • Monday, January 27: myTomorrows: Connecting with Clinical Trials Tailored to Your Needs
    ALS Association team members will detail our partnership with myTomorrows and explain how a trial navigator can help find clinical trials you are eligible for and provide one-on-one support with any next steps you decide to take.
  • Tuesday, January 28: Turning Science into ALS Clinical Trials
    Dr. Nicholas Maragakis, from Johns Hopkins University Department of Neurology, will discuss what goes into developing ALS clinical trials.
  • Wednesday, January 29: Access for All in ALS (ALL ALS) Consortium
    Dr. Kelly Gwathmey, from Virginia Commonwealth University, will discuss the purpose and goals of the Access for ALL in ALS Consortium (ALL ALS) and how to participate in the study.
  • Thursday, January 30: CDC National ALS Registry and ALS Focus Survey Program: Participate in Research from Your Home
    Learn more about the CDC National ALS Registry, our ALS Focus Survey Program, and how people living with ALS and caregivers can participate in this vital research from the comforts of home, anywhere in the country.
  • Friday, January 31: Update on ALS Therapeutic Landscape and ALS Association’s Strategy to Have More, Better, and Faster Trials
    ALS Association Senior Vice President of Research Dr. Kuldip Dave will discuss where we are today with ALS therapeutics and what’s to come in the future.
Our hope is for the community to learn how they can connect with clinical trials that are most appropriate for them, that there is research they can participate in from the comfort of their homes, and to give an idea of what the future of ALS research looks like.”
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Clinician and patient

Whether you’re living with ALS, caring for someone who is, or a health care provider supporting the community, this series has something for you. “Every topic that was chosen is not limited by location and will be relevant to individuals nationwide,” Ryan said.

Clinical Research Week is more than just a chance to learn—it’s a chance to make a difference. From participating in clinical trials to supporting groundbreaking research, you’ll discover ways to take an active role in making ALS livable for everyone, everywhere, until we can cure it.

Ready to join us? Don’t wait—Register TODAY to gain access to all five webinars and participate in as many sessions as you’d like.

If you would like to receive monthly ALS research updates, SUBSCRIBE to our newsletter, Research Matters.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox 
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Comments

Submitted by: Brian B. on Tue, 01/21/2025

CTX1000 from Celosia Therapeutics in Australia sounds like one of the more promising upcoming trials. How can the association help fast track this to the USA, as well as COYA 302? There’s nothing else out there to potentially extend life like these two treatments / trials from what I see. My toddlers need their dad.

Submitted by: Stephanie O. on Wed, 01/29/2025

We agree that we urgently need new ALS treatments. We have been closely following the development of both CTX1000 and COYA-302, just like we follow other drug development programs in ALS. Currently, neither company has received investigational new drug (IND) approval from the FDA, which is required before clinical trials can begin in the United States. We continue to urge the FDA to move forward as quickly as possible when reviewing ALS drugs, staying consistent with its 2019 Guidance (https://www.fda.gov/media/130964/download) on ALS clinical trials.

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