C94 INTERNATIONAL ALLIANCE OF ALS/MND ASSOCIATIONS
Harris R
Motor Neurone Disease Association of Australia Inc (MNDAA), Unley, Australia
E‐mail address for correspondence: [email protected]
The International Alliance of ALS/MND Associations was founded in November 1992 to provide a forum for support and the exchange of information between the worldwide associations. More than 50 national patient support and advocacy groups from over 40 countries worldwide have joined together to form the International Alliance.
The Alliance's objectives are to: 1) increase awareness of ALS/MND worldwide; 2) exchange and disseminate information; 3) improve the quality of care; 4) stimulate and support research; and 5) provide an international identity
It addresses these objectives by delivering the following activities:
The website – www.alsmndalliance.org
The International March of ALS/MND Faces banner
The Alliance Resource Library ‐ www.mndallianceresources.org
The Partnership Program linking organisations in four regions
The Directory of Associations to facilitate access
Two awards to recognize significant contributions to people living with ALS/MND. The Forbes Norris Award and the Humanitarian Award.
Policy documents to assist members, including the Baseline of Services for People Living with ALS/MND, Statement of Good Practice in Drug Trials, and Guidelines for Predictive Testing
A member hosts the International Symposium on ALS/MND
Grants to assist members of the Alliance ‐ the Support Grant and the Travel Grant
Our aspirations are to:
Help member organizations enhance their response to the needs created by ALS/MND including strategies for care, fundraising, and awareness
Promote access for people with ALS/MND to the best available support no matter where in the world they are
Be the trusted source of information for members and patients
Coordinate advocacy with international organizations including drug companies, NGOs and international medical and health organizations
Maintain the human face of ALS/MND
C95 FROM MIND TO MOVEMENT: NEUROTECHNOLOGIES TO RECONNECT THE BRAIN TO THE WORLD
Donoghue J
Brown University, Providence, USA
E‐mail address for correspondence: [email protected]
Background: Motor neuron disorders such as ALS, as well as spinal cord injury and other paralyzing conditions, prevent movement intentions from being realized. Neurotechnology promises to provide a physical means to restore a new communication link out of the brain when it cannot directly control the muscles. A neuromotor prosthesis (NMP) is a neurotechnology that can detect neural signals reflecting movement intent and convert them into a command. This signal could be used to operate a range of devices, including environmental controls and computer software, in order to restore independence and environmental control to individuals with movement impairments. Devices that use generalized EEG signals as well as the detailed neuronal activity are being developed to provide a physical pathway from the brain to the outside world.
Objectives: This presentation will describe recent developments in NMPs, emphasizing recent results from the Braingate clinical trial.
Methods: The Braingate (Cyberkinetics, Inc) device is approved by the FDA for a 5‐patient pilot clinical trial. Two tetraplegic humans have been implanted with a baby aspirin‐sized sensor on the cortical surface that records neural activity from multiple neurons in the motor cortex. The sensor is connected to external signal processors and computers that decode electrical signals into a command. The trial is examining safety of the implant and control capabilities.
Results: It is possible to record neural activity in the motor cortex in a person with paralysis and this activity can be modulated by thought alone. No adverse events occurred in the first year. The first Braingate patient has been able to use computer software to open e‐mail, for environmental control (TV remote), and to operate robotic hands and limbs.
Discussion: Although at early stages, devices that allow paralyzed humans to use neural activity to operate a range of devices is becoming feasible. Systems will require further development to make them operate without technical oversight. In addition, the devices must be further developed to provide reliable and useful actions for people with paralysis.
Conclusions: Early stage developments in brain interfaces suggest that neurotechnologies are beginning to emerge that may significantly modify the lives of individuals with paralysis from neurodegenerative diseases or CNS trauma.