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SHARE: Focus on Amyotrophic Lateral Sclerosis
Amyotrophic lateral sclerosis (ALS) is a devastating, complex, and heterogeneous neurodegenerative disease that affects the neurons that control voluntary muscle movement. People with the disease become progressively weaker and lose their ability to walk, talk, move, swallow, and eventually breathe on their own, with most people dying within 3-5 years of symptom onset. But there is hope: scientific discoveries have resulted in the identification of multiple therapeutic targets, and three disease-modifying, plus one symptom-managing, ALS therapies have been approved by the Food and Drug Administration (FDA). Yet, to develop truly effective ALS treatments, we must address numerous challenges.

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Join Our Listserv

For the most current updates on NIH activities related to ALS, including upcoming activities, research opportunities, and NIH-funded science advances, sign up for our listserv.

**Notice of Funding Opportunities**

PAR-22-076 Prospective Observational Comparative Effectiveness Research in Clinical Neurosciences (UG3/UH3 Clinical Trial Not Allowed)--**Expiration Date:**May 8, 2025

PAR-22-105 Dissemination and Implementation Research in Health (R01 Clinical Trial Optional)--**Expiration Date:**May 8, 2025

News and Upcoming Events

Rare Neurodegenerative Disease Efforts Under the ACT for ALS: March 8
	NIH Implementation of ACT for ALSALS Lived Experience Community

NINDS seeks to include people with lived experiences of neurological disorders (PWLE) in the planning, execution, and communication of research.

*Who are people with lived experience (PWLE)?*

In the context of NINDS’ research, the lived experience community is comprised of individuals directly affected by neurological disorders. This includes those diagnosed and genetically at risk, as well as caregivers, loved ones, and those who have lost a family member to a neurological disease.

*Opportunities for PWLE*

To better represent and understand PWLE, NINDS invites the community to be active in the design and decision-making of research by joining working groups, planning committees, advisory groups, and other projects. Join our lived experience expert list to be contacted as opportunities arise.

*Participating in Clinical Research*

For more information and opportunities to participate in research studies, visit the NIH Clinical Trials page.

Current ALS-specific Funding Opportunities

Notice of Special Interest: Advancing Research for Amyotrophic Lateral SclerosisFeatured Initiatives and Programs

National Academies of Sciences, Engineering, and Medicine (NASEM) study on ALS: Accelerating Treatments and Improving Quality of Life
	Accelerating Access to Critical Therapies for ALS Act (ACT for ALS)
	NIH ALS Expanded Access Programs
		ALS Public-Private Partnerships
		Critical Path (C-Path) for Rare Neurodegenerative Diseases (CP-RND)Related Federal Programs

Alzheimer’s Disease and Related Dementias
	Amyotrophic Lateral Sclerosis (ALS) Strategic Priorities
	Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry: National ALS Registry
	Food and Drug Administration: ACT for ALS implementation
	Department of Defense: Congressionally Directed Medical Research Program for ALSProceedings and Outcomes

ALS Strategic Priorities Workshop
	ACT for ALS & ALS Strategic Priorities Community Update
	Technical Assistance Webinar recording for RFA-NS-24-029 Amyotrophic Lateral Sclerosis (ALS) Intermediate Patient Population Expanded Access (U01 Clinical Trial Required)Related Topics

**NINDS Division of Neuroscience**

The NINDS Division of Neuroscience (DON) supports research aimed at understanding fundamental mechanisms of development, structure and function of the nervous system in health and disease.  DON utilizes a variety of grant mechanisms to support this research.  A complete list of grant mechanisms can be found on the Types of Research Support page.

**NINDS Interdisciplinary Team Science RM1**

The NINDS Interdisciplinary Team Science RM1 encourages interdisciplinary teams of experts that seek to cross technical and conceptual boundaries through collaboration to achieve ambitious goals for basic, translational, and clinical research questions within the mission of NINDS.

**NINDS Division of Translational Research**

The NINDS Division of Translational Research (DTR) provides funding and through grants, cooperative agreements, and contracts to academic and industry researchers to advance early-stage neurological technologies, devices, and therapeutic programs to industry adoption (i.e., investor funding and corporate partnerships).

**Ultra-rare Gene-based Therapy (URGenT) Program**

The Ultra-rare Gene-based Therapy (URGenT) program will support the development of state-of-the-art gene-based therapies for ultra-rare neurological diseases, including familial forms of ALS.

**NINDS Biomarker Program**

The NINDS Biomarker Program 1) promotes rigorous biomarker identification and validation through milestone-driven funding opportunities, 2) maintains an updated website containing information about existing NINDS and NIH biomarker sample and data repository resources and 3) facilitates the development of future resources focused on bridging the gaps in the biomarker development pipeline.  In addition, the Clinical Trial Readiness for Rare Neurological and Neuromuscular Diseases program of NINDS DON supports studies to develop clinically validated biomarkers and clinical outcome assessment measures appropriate for use in upcoming clinical trials.

**NINDS Small Business Program**

The NINDS Small Business Program is committed to helping small business concerns commercialize their technologies through its grant funding, technical assistance program participation, and outreach at meetings.

**NINDS Office of Neural Exposome and Toxicology Research (ONETOX)**

The NINDS Office of Neural Exposome and Toxicology Research (ONETOX) supports research and provides resources to advance knowledge of internal and external exposures that affect brain and nervous system health (Neural Exposome), leads research related to chemical threats, and provides resources that promote chemical safety.

**NINDS Division of Clinical Research**

The NINDS Division of Clinical Research (DCR) provides oversight for clinical trials to test the safety and efficacy of innovative treatments of neurological disorders and stroke, epidemiological studies of natural history, biomarker studies, and studies designed to elucidate the causes of neurological disorders. The Division of Clinical Research also develops new clinical science initiatives, ensures the proper level of patient safety monitoring, maintains the scientific integrity of clinical trials, and provides expertise in statistics and clinical trial design to the Institute and to clinical investigators.

**NIH Brain Research Through Advancing Innovative Neurotechnologies® (BRAIN) Initiative**

The NIH BRAIN Initiative is accelerating the development and application of innovative technologies to enable researchers to produce a revolutionary new dynamic picture of the brain that, for the first time, shows how individual cells and complex neural circuits interact in both time and space. Long desired by researchers seeking new ways to treat, cure, and even prevent brain disorders, this picture will fill major gaps in our current knowledge and provide unprecedented opportunities for exploring exactly how the brain enables the human body to record, process, utilize, store, and retrieve vast quantities of information, all at the speed of thought.

**Rare Diseases Clinical Research Network (RDCRN)**

The RDCRN program is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing. Through the RDCRN consortia, physician scientists and their multidisciplinary teams work together with patient advocacy groups to study more than 200 rare diseases at sites across the nation. The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium.

**NINDS Division of Intramural Research**

Investigators in the NINDS intramural program conduct research in the basic, translational, and clinical neurosciences at the NINDS Bethesda, Maryland laboratories.



Featured NINDS ALS Research Resources

Image
              3D illustration of neurons.

The NINDS Human Cell and Data Repository (NHCDR) includes fibroblasts and/or induced pluripotent stem cells (iPSC) for ALS, FTD, Alzheimer’s Disease, Ataxia-telangiectasia, Huntington’s Disease, Parkinson’s Disease, and healthy controls.  Cell sources, including isogenic cell lines for current and new diseases covered by the NINDS are continuing to be added.



Image
              3D illustration of cells with DNAL helix on the background

The iPSC Neurodegenerative Disease Initiative (iNDI) of the NIH Intramural Center for Alzheimer's and Related Dementias (CARD) is building a repository of genetically engineered cellular models of Alzheimer’s and related dementias, including FTD/ALS.



Image
              NeuroBioBank logo

The NIH NeuroBioBank, supported by the NIMH, NINDS, and NICHD is a national resource for investigators utilizing human post-mortem brain tissue and related biospecimens for their research to understand conditions of the nervous system.

Image
              CP-RND logo

Critical Path (C-Path) for Rare Neurodegenerative Diseases (CP-RND) is a public-private collaboration focused on advancing the understanding of neurodegenerative diseases and fostering the development of treatments for ALS and other rare neurodegenerative diseases.

Image
              Wheel infographic with icons representing 5 ALS strategic plan working group topics. Images are of four hands, hands holding a heart, medicine, brain and spinal cord, and a neuron

In February 2023, the NINDS ALS Strategic Priorities(pdf, 1818 KB) were approved by the NINDS Advisory Council. These priorities were developed with input from a public Request for Information (RFI responses(pdf, 180 KB)) and working groups of scientists, clinicians, advocates, and people living with ALS.

Estimates of Funding for Various Research, Condition, and Disease Categories

Research/Disease Areas*
			FY 2020
			(Actual)
			FY 2021
			(Actual)
			FY 2022
			(Actual)
			FY 2023
			(Estimated)ALS
			$107
			$120
			$151
			$206*Dollars in millions and rounded

*To learn more about this NIH Investment, please visit the Categorical Spending site and enter "ALS".*



Contact Us

Contacts
	Name
			Role
			Areas of Interest**Amelie Gubitz, PhD**
			Lead Program Director for ALS
			ALS basic, translational, and clinical research; ALS Public-Private Partnership**Carol Taylor-Burds, PhD**
			Program Director
			Biomarkers**Christine Swanson-Fischer, PhD**
			Program Director
			ALS Public-Private Partnership**Emily Caporello, PhD**
			Program Director
			Small business innovative research (SBIR) & small business technology transfer (STTR)**Frank Shewmaker, PhD**
			Program Director
			Frontotemporal dementia (FTD)**Srikanth Ranganathan, PhD**
			Program Director
			ALS Public-Private Partnership**Lumy Sawaki-Adams, MD, PhD**
			Program Director
			Clinical research, including natural history & clinical trials**Amy Y. Tsou, M.D., M.Sc.**
			Program Director
			Clinical research and outcomes**Rebekah Corlew, PhD**
			Lived Experience Engagement Strategist
			Incorporating perspectives of people with lived experiences throughout the research process**Elio Peraza, M.Sc.**
			ALS Program Coordinator
			Planning, coordination, and management of internal/external ALS-related efforts Current Research
  
    

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