Laurance Johnston, Ph.D.

Historically, SCI has been one of mankind’s most devastating disorders. The ancient Edwin Smith Surgical Papyrus written in Egyptian hieroglyphics states that SCI is an ailment not to be cured, a view that has prevailed for 5,000 years - until recently. For the first time in mankind’s history, there is shift in our consciousness about what is possible after injury. Patients once resigned to the defeating you-will-never-walk-again attitude that is deeply imprinted in consciousness after injury are becoming more and more convinced that some functional recovery truly may be possible. Given the lessons of history for other disorders and diseases, this shift by itself will greatly accelerate the development of SCI therapies.

Background: Chaos theory postulates that a flap of a butterfly wing can initiate a disturbance that ultimately leads to a hurricane across the world. In this case, the butterfly wing’s flap was the severe injury in a 1989 auto accident of Hrafnhildur “Bido” Thoroddsen, the 17-year old daughter of Auður Guðjónsdóttir. Although an individual tragedy, Bido’s injury initiated a cascade of events that could significantly affect SCI globally.

As featured in the Icelandic documentary You Will Never Walk Again, Guðjónsdóttir initiated a world-wide search for therapies that could help her daughter. Her struggle became the seed that germinated into her desire to create an informational resource that could help others who sustain such a devastating injury. Due to her ongoing SCI advocacy efforts, she was selected as 2001 Icelandic Woman of the Year.

Guðjónsdóttir’s search eventually led to Dr. Shaocheng Zhang, a Chinese surgeon who, as discussed elsewhere, surgically links a nerve above the injury site to a nerve below the injury site, creating a new functional connection between the brain and previously paralyzed areas. However, in the mid-1990s, it was politically difficult for Zhang to travel to Iceland to perform the surgery, and Bido was not healthy enough to travel to China. It took the intercession of Iceland’s President Vigdis Finnbogadottir with the Chinese leadership to obtain permission for Zhang to travel to Iceland. Zhang’s surgery helped Bido regain substantial, life-enhancing function.

As Guðjónsdóttir expertise grew, she started the planning for an international SCI conference. In addition to Icelandic health officials, her efforts were aided by 1) the now SCI-sensitized President Vigdis Finnbogadottir and 2) Lara Margaret Ragnarsdottir, a member of Iceland’s Althingi/Parliament, the country’s representative to the Council of Europe (COE). In addition, the WHO agreed to cosponsor the conference. (Photo: Audur Gudjonsdottir, Former President Vigdis Finnbogadottir, Althingi Member Lara Margaret Ragnarsdottir, and Report Author Laurance Johnston at 2001 SCI Reykjavik Conference). 

The overall goal of this conference held in Reykjavik, Iceland, June 1-2, 2001 was to catalyze the development of new paradigms to address SCI. As such a diversity of perspectives was brought in, ranging from state-of-the-art stem-cell biology to the ancient wisdom of Eastern Medicine.

As emphasized in her Foreword, President Finnbogadottir opened the meeting with a discussion of SCI as a human-rights issue. She emphasized that medical research is one mechanism by which people with SCI can be meaningfully integrated into society and enjoy mankind’s most fundamental freedom of self-determination. She noted that our efforts should not be viewed as making one whole again because the spirit is always whole. The goal is empowerment, freedom of self-determination, and the ability to manifest the spirit within.

In a letter dated December 12, 2001 (Appendix 4), WHO Director General Dr. Gro Harlem Brundtland declared a willingness to take part in establishing a WHO Collaborating Center on Human SCI to be located in Reykjavik. This letter stated: “The Collaborating Center will support WHO global activities. The terms of reference will be the establishment of a database and to act as a focal point for international research on spinal cord injury.”

In addition, Ms. Ragnarsdottir spearheaded the development of a COE report (doc. 9401) recommending: “… that a world center for the coordination of research and development concerning spinal cord injuries should be established with the World Health Organization … together with a research database that would pool all existing and future medical and scientific material on spinal cord injuries and ensure effective co-operation between doctors and researchers from all over the world.”

A draft mission statement for the Collaborating Center is provided in Appendix 5.

Conclusion: By supporting this vision of the future, Iceland is catalyzing its creation. Because this effort has the potential to help so many throughout the world yet relatively few of its own citizens, it represents a standard by which a society is judged. Instead of force that is so commonly used in today’s world of geopolitical self interest, Iceland is employing power, whose impact will be much more enduring.

Overall, in recent decades, there has been tremendous progress in our understanding of traumatic spinal cord injury, an understanding that is beginning to be transformed into real-world therapies. Although this disorder was once considered so intractable that its repair was described as the Holy Grail of neurological research, this Grail is now within our grasp.

A decade ago, the author of this report attended a US Congressional hearing focused on SCI. At this hearing, a colleague with high-level quadriplegia characterized SCI research by paraphrasing a famous Martin Luther King speech. He believed that after a long trek in the wilderness, we have climbed the mountain and for the first time can see in the distance the Promised Land of restored function, of which some may complete the journey and some may not.

Times have changed. This is no longer a mere vision hovering on the horizon. With groundbreaking scientists and clinicians guiding the way, the first pioneers with SCI are beginning to step, in some cases literally, into this Promised Land. It is not false hope but a growing reality coalescing in bits and pieces. Through creating this nascent SCI-Collaborating Center, the people of Iceland are helping to create a fast-lane to this Promised Land.

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