ALS Advocacy in Action From the Director’s Desk Jaydeep M. Bhatt, M.D. As neurologists at the Eleanor and Lou Gehrig MDA/ALS Center we are intimately aware of the challenges our patients with motor neuron disease face when searching through current research for a cure. There are ongoing clinical trials at different centers across the nation and promising drugs in the pipeline. Since this information can be overwhelming, many patient advocates recognize the immediate need to consolidate existing databases of ALS patients. Centralizing data would streamline research efforts and make it easier for patients and scientists with mutual needs to find each other. It is vitally important that our elected officials in Congress understand this need and enact legislation to achieve it. I recently attended a forum organized by the American Academy of Neurology (AAN) to gather neurologists who advocate for their patients on a variety of issues, and who work to create public policies that make a difference. My issue was raising the profile of ALS in Congress, and specifically, to encourage Congress to pass the ALS Registry Act, which is currently an outstanding bill in both the House of Representatives and the Senate. This bill would allow the Centers for Disease Control (CDC) to fund a national system to collect environmental and genetic information that would help us understand the causes of ALS and serve a variety of research needs. I met several neurologists in the AAN who agree that ALS research is a crucial issue that must be addressed. Thanks to the tireless advocacy of patients, their families, and concerned caregivers acting through organizations such as ALS Association and the MDA, several congressmen and senators have sponsored the bill. However, our work continues. Unfortunately, the ALS Registry Act was not included in the administration’s 2007 budget. This means its advocates across the country will need to work with their elected officials to make the ALS Registry a priority on the congressional agenda. If past efforts of ALS advocates are any measure, this challenge will be met and handled tirelessly and successfully. For those interested in learning more, please email me at alscenter@columbia.edu Attn: Dr. Jaydeep Bhatt.