Text Box: On March 29, 2007, Neurotech Network participated in the Public Policy Day in Washington, DC hosted by Neurotech Industry Organization (NIO), the trade association for the neurotechnology industry. The group met with several senators, congress members and agency directors from the National Institutes of Health and the Food and Drug Administration with a message that this young growth industry has potential to change the progress and treatment of many neurological diseases and disorders. The main effort was to introduce the National Neurotechnology Initiative (NNTI), positioned similar to the Human Genome Project. The NNTI seeks to secure government funding to establish national research centers in neurotechnology, establish advisory panels to direct that research and accelerate translational development. The later is truly the effort to move devices from the laboratory to the end user. Neurotech Network was the only non-profit organization attending the event. Understanding the business implications and policy initiatives, our message during this first time visit was simple: “If we don’t get the devices and procedures into the hands of the people (patients) for whom they are intended, then the money we spend in research and development is going to waste.” During the visits with legislative representatives, Jennifer French joined the small team for each meeting. She used her own disability and experience using an FES system to deliver the message of how neurotechnology devices can impact a person’s life with a neurological disorder or disease. French stated, “After explaining that I am a quadriplegic, I used the system to stand out of my wheelchair and said, ‘Devices like the one you see me using will never get to the market if we keep the policies that we have today. Things need to change.’ French has joined the Public Policy Committee of NIO. This committee is current working to submit this initiative to legislators and provide a voice for the users of neurotech devices. Text Box: Brain Waves Another pioneering participant in the world of new neurotechnology devices was also featured recently on television. In the Frontline series showcasing the story “So Much, So Fast,” Stephen Heywood steals the show. At 29 years old, Stephen was diagnosed with ALS, Lou Gehrig’s disease, and given a life span of two to five years. The story features the consequence of this disease not only on Stephen, but his wife, Wendy, family and friends. Watching the physical change of Stephen as an able-bodied custom builder to a locked in person is eye opening. The first person with ALS to receive and use the BrainGate system developed by CyberKinetics, Stephen used the technology to communicate with his son. This technology implants an electrode onto the surfaced of the motor cortex in the brain. The electrode captures signals from the motor cortex and translates them to computer movements. Here Stephen can think about moving a computer cursor and it moves. “Stephen Heywood’s participation in the BrainGate pilot trial can be compared to Orville Wright’s first plane flight from Kitty Hawk. His efforts over the last year have demonstrated the potential of the BrainGate System to improve the lives of those with ALS and other motor neuron diseases,” stated Timothy Surgenor, Cyberkinetics’ President and CEO. “Stephen volunteered to participate in the clinical trial of the BrainGate technology because he believed it could change the world,” added James Heywood, CEO and d’Arbeloff Founding Director of the ALS Therapy Development Foundation and Stephen Heywood’s brother. “Following a recent BrainGate session in which he worked to control a robotic arm, Stephen sent me an email message that read: ‘After being paralyzed for so long, it is almost impossible to describe the magical feeling of imagining a motion and having it occur.’ As the system develops throughout the clinical trial, it is intended to be used to communicate and move robotic prosthesis with thought power. Read about Stephen and the amazing story at http://www.pbs.org/wgbh/pages/frontline/somuchsofast/ Dystonia Covering a little known disorder and a little known treatment, Twisted is a film explaining the experience of several people living with Dystonia. Laurel acquired Dystonia after a car accident and was not diagnosed until several visits to physicians. It also features Shari whose speech has been distorted. Dystonia is movement disorder that causes the muscles to contract and spasm involuntarily. Dystonia can affect one muscle group, or your whole body; it can cause your body to twist. It is as though your brain has a mind of its own. The film also features Remy Campbell who would walk bent over at a 45-degree angle while suffering from constant pain. Several years ago, Remy received a device for Deep Brain Stimulation, DBS, in which electrodes are implanted in the brain as a pacemaker for the brain’s electronic activity. The result gave her control to walk upright and pain free. Although there is no cure for Dystonia, DBS is a powerful therapy that brings relief to many. The film features other stories of those afflicted with Dystonia and their personal stories of triumph over a disorder that can take away so much. View the detail, trailers and more at: http://www.blinddogfilms.com/twisted/index.html Broad Scope Book Away from the visual arts, one other “main stream” media outlet is the publishing of a book. After two years of research, John Hopkins Press released the book Shattered Nerves: How Science is Solving Some of Modern Medicines’ Most Perplexing Problems by Victor Chase. Covering some of the history of neurotechnology devices including early bladder systems or prosthetics, the book brings the reader through an understanding of the science and the researchers behind it. Bringing these high tech devices home, Chase features users of devices and how they live with their disabilities or disorders and how the devices have changed the way that they live. Devices featured include the cochlear implants for the hearing impaired, retina stimulations for visual impairments, bladder and bowel control devices, hand control systems for quadriplegics and standing systems for those with paralysis. The book not only features the technology but also poses the questions for future development and the ethics behind the research. Shattered Nerves is available through Amazon and other major book stores. To read more about the book and the author visit http://www.victordchase.com/bio.htm For more resources, visit the Educate section of our website, www.NeurotechNetwork.org

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Text Box: Advocating for Access Text Box: Educate: Neurotechnology in the Media

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