ALS Education and Research
- ALS Therapy Development Institute (ALS TDI)
This is the Web site of the foundation started by Jamie Heywood and featured in So Much So Fast. It includes information about the institute's research, including clinical trials, techniques, and treatment targets; forums to exchange information; and links to the latest articles and scientific publications on ALS.
- The Muscular Dystrophy Association
The Muscular Dystrophy Association has a division devoted to ALS research, and its Web site has a list of clinical trials currently in production.
- International Alliance of ALS/MND Associations
Though the alliance does not conduct research itself, it maintains a list of international organizations who do. It has also created a Resources Library to share information and a directory of ALS associations around the world.
- The ALS Association (ALSA)
In addition to patient and caregiver education, the ALSA Web site is a good place to find the latest research news.
- Project ALS
Project ALS was founded by theater producer Jenifer Estess, her friends and family, after she was diagnosed with ALS at age 35. Eighty percent of the funds raised by Project ALS are directed to research and education, with four main target areas: genetics, drug discovery, stem cell research and disease pathways (the study of how ALS progresses).
- The Day Laboratory for Neuromuscular Research
This lab, run by Dr. Robert Brown, studies the underlying causes and possible treatments for ALS. Scientists here are exploring approaches including gene therapy and stem cell therapy, as well as testing existing drugs for efficacy and looking for biomarkers to help understand how the disease progresses.
- The Robert Packard Center for ALS Research at Johns Hopkins
Researchers here also focus on identifying ALS's underlying causes and developing therapies. Their current approaches include isolating, identifying and cloning genes and mutations that may control the disease's progression.
- The ALS Center at the University of California, San Francisco
This lab is involved in several drug trials and is also working to help establish a national gene bank with blood drawn from ALS patients. Scientists here are also studying possible environmental and genetic risk factors.
Living with ALS
- Team TDI Family Sites
The ALS TDI has a section of its Web site where individuals and families affected by ALS can build their own Web sites, as well as links to the many personal Web sites that have already been built.
- Leo's Story
Here, Leo Greene, a reporter for a California newspaper, chronicles his battle against ALS in words, photos and videos. Entries include "Finding a Way to Keep Hoping," "Taking a Spiritual Journey in Terms of What Comes Next," and "Coping Strategies for ALS Sufferers."
- The ALS Advocacy Community Blogroll
Another collection of blogs written by people living with ALS. This list is in order of most recent entry.
Quickening the Pace of Biomedical Research
- The National Institutes of Health Roadmap for Medical Research
This project, begun by the NIH in 2002, is finding ways that all branches of the NIH can work together to modernize and streamline biomedical research. The roadmap has focused on three areas of opportunity for improving research: finding new tools for gathering and sharing biological data, reconfiguring traditional research teams and creating an accelerated and improved clinical research model. The project's Web site also catalogs the research aimed at furthering these three goals that NIH has funded, and profiles recipients of the NIH Director's Pioneer Award, which is given to scientists doing creative research that might otherwise be considered too risky to fund.
- FasterCures/The Center for Accelerating Medical Solutions
FasterCures -- which calls itself an "action tank" -- is an organization dedicated to removing the roadblocks in the current biomedical research system. Its Web site lays out its plan to change the existing process and describes the projects its funded, such as a Web site to promote the importance of donating tissue samples for research. It also includes a list of research and advocacy organizations for an array of diseases.