Prize4Life: Infrastructure and Resources for ALS Research
The following organizations offer information about amyotrophic lateral sclerosis (ALS), and some provide other services to people with ALS and their caregivers. Many additionally raise funds toward ALS research.
The ALS Association
The association promotes ALS awareness, funds research, and advocates for people living with ALS. The association can also provide referrals to a wide variety of community resources. Donations raised from the well-known Ice Bucket Challenge generally go to the ALS Association.
ALS Therapy Development Institute
This nonprofit biotech, led by people with ALS and drug development experts, is dedicated to finding a cure for ALS. Donations raised from the ALS Pepper Challenge generally go to the ALS Therapy Development Institute.
Compassionate Care ALS
The Massachusetts-based organization is dedicated to supporting people diagnosed with ALS, their families, and their communities through support programs, workshops on cultivating compassion, and other programs.
Les Turner ALS Foundation
This Chicago-based organization provides education and support services for people living with ALS. The foundation also supports the Les Turner ALS Center at Northwestern Medicine, bringing together three research laboratories and a multidisciplinary patient clinic under one umbrella.
A.L.S. Family Charitable Foundation
This New England-area organization raises funds for ALS research and provides financial and emotional support to individuals living with ALS and their families.
Muscular Dystrophy Association (MDA)
The MDA supports research and provides help for people living with muscular dystrophy, ALS, and related muscle-debilitating diseases, as well as for their loved ones.
Christopher and Dana Reeve Foundation
This foundation is dedicated to advancing quality of life for those living with paralysis from any cause, and to discovering cures for spinal cord injury. Information specialists are available to talk, peer mentoring is provided, and Quality of Life grants are offered to those who qualify.
Studies, Research, and Clinical Trials
If you'd like to know more about ALS research or participate in research, these resources can help you find the information you need:
National ALS Registry
Created by the Centers for Disease Control and Prevention’s (CDC) Agency for Toxic Substances and Disease Registry, the National ALS Registry collects, manages, and analyzes data about people with ALS in the United States. Data collected helps to track the number of ALS cases, and provides information about demographics and occupational and environmental exposure of people with ALS. It is hoped that this information will advance understanding of risk factors for ALS. The Registry includes data from national databases as well as that provided by individuals with ALS.
The NIH NeuroBioBank is a collection of brain tissue (taken after death) from people with neurological diseases and other disorders. Scientist are able to study ALS more thoroughly with tissue from people who had the disease. The goal of the bank is to increase the amount of high quality specimens for research. If you are interested in being a donor, visit the Brain Donor Project.
Northeast Amyotrophic Lateral Sclerosis Consortium
This organization's mission is to translate scientific advances into new treatments for people with ALS and motor neuron disease. It has a clinical trial database and resources for people who have ALS, their caregivers, and ALS researchers.
This New York-based organization aligns researchers and doctors from many disciplines to collaborate and share data openly, in an effort to find treatments for ALS.
This nonprofit organization awards prizes to researchers with the goal of accelerating the discovery of treatments and a cure for ALS.
NIH Clinical Research Trials and You
Clinical trials provide the opportunity for researchers and scientists to better understand diseases so that more treatment options become available.
Video: ALS - Amyotrophic lateral sclerosis | Miscellaneous | Heatlh & Medicine | Khan Academy
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