SESSION 11 JOINT CLOSING SESSION

C94 INTERNATIONAL ALLIANCE OF ALS/

MND ASSOCIATIONS

HARRIS R

Motor Neurone Disease Association of Australia Inc

(MNDAA), Unley, Australia

E-mail address for correspondence: rharris@mnd.asn.au

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:

N The website – www.alsmndalliance.org

N The International March of ALS/MND Faces banner

N The Alliance Resource Library - www.mndalliancer-

esources.org

N The Partnership Program linking organisations in four

regions

N The Directory of Associations to facilitate access

N Two awards to recognize significant contributions to

people living with ALS/MND. The Forbes Norris

Award and the Humanitarian Award.

N 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

N A member hosts the International Symposium on ALS/

MND

N Grants to assist members of the Alliance - the Support

Grant and the Travel Grant

Our aspirations are to:

N Help member organizations enhance their response to

the needs created by ALS/MND including strategies for

care, fundraising, and awareness

N Promote access for people with ALS/MND to the best

available support no matter where in the world they are

N Be the trusted source of information for members and

patients

N Coordinate advocacy with international organizations

including drug companies, NGOs and international

medical and health organizations

N 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: John_Donoghue@brown.

edu

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 devel-

opments 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 sensoron 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.

Amyotrophic Lateral Sclerosis. 2005 (Suppl 1); 6: 64

ISSN 1466-0822 print/ISSN 1471-180X online # 2005 Taylor & Francis

DOI: 10.1080/17434470510045267

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