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"Saving lives depends on our ability to initiate a
cultural revolution in the biomedical industry… a
revolution that relies on setting in motion the magic of
shared information, often referred to as knowledge that
is open access or open source… call it what you like.
This is about curing disease and relieving human suffering
by aggregating cutting edge medical research discoveries
and exposing it to the collective intelligence of all scientific
minds so they can work on diseases together as a common
problem. "
-Regan Carter,
December 2007
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About Regan
 Regan Carter was diagnosed with ALS, or Lou Gehrig’s Disease, in 2003. Following his diagnosis, Regan became actively involved in medical research reform. He became deeply frustrated upon realizing that after nearly 70 years of research, scientists still knew virtually nothing about ALS. But even worse, there had been very little progress made towards developing treatments or cures for any neurological diseases.
In the last years of his life, it became Regan’s singular mission to institute a mechanism for information sharing- an open source research community- dedicated to the advancement of knowledge and cures for neurological diseases. Regan envisioned the power of people working together worldwide, sharing information on a level no longer inhibited by technology, funding, and institutional tradition. He imagined them reveling in a new found synergy, catapulting our understanding of neurological diseases towards the edges of human knowledge- not just the knowledge of a select group of researchers tethered to proprietary funding or encapsulated lines of investigation.
Regan passed away on February 15th, 2008
The team at Cure Neuro is committed to carrying Regan's
vision forward by actively promoting a collaborative model
for medical research in the neurosciences.
A video made in the final weeks of Regan Carter's life
can now be viewed on youtube. In this video, Regan shared
his vision for medical research reform despite the challenges
and limitations his condition placed on him. Click
here to watch the video now.
Writings by Regan
 Getting on the Right Track, 2/08
Medical Research: Condition Critical, 12/07
The Power of Philanthropy in the U.S., 11/07 |
Comments
“I celebrate Regan's life and his commitment to helping others right up to
his last days.
I am inspired by his courage and his indefatigable spirit.”
-Greg Simon, President, FasterCures
“Regan's dedication, thoughtful communications
and dissemination of instructive information were
indeed an inspiration to me. He will be long remembered
and has had an effect on this institution and many
other organizations and individuals.
I extend my sympathies to all who were close to him. He will be greatly missed.”
-Joe Robertson, President,
Oregon Health & Sciences University |
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