Wise Young
12-31-2001, 09:04 AM
In response to a question asked in the Cure Forum, I thought that it might be useful to categorize the organizations that support spinal cord injury cure research and where support has been lacking.
1. Cure-oriented Foundations. These are mostly organized by people and families with spinal cord injury, i.e. Christopher Reeve, Paralyzed Veterans, Kent Waldrep, Chuck Carson (Spinal Cord Society), Marc and Nick Buonocanti (Miami Project), Danny Heumann and family, Fran Brown and Family, Peter Morton and Family, Joan Irvine-Smith, and many others. There are several overseas foundations, such as the International Spinal Research Trust (IRST). Each of these foundations have small groups of major donors who have been motivated by altruism or contact with people with spinal cord injury.
2. The National Institutes of Health (NIH). Normally, I would not include NIH as a "supporter" of a field. However, in the 1970's and 1980's when there was tremendous pessimism about the possibility of a cure for spinal cord injury, a few people in the leadership of NIH, particularly Murray Goldstein who eventually headed the National Institutes of Neurological Diseases and Stroke (NINDS) worked hard to promote research in the field. I know because I was a recipient of several NIH grants, including a Jacob Javits award in the 1980's, that gave me the start in the field. Likewise, the National Acute Spinal Cord Injury Study (NASCIS) was funded almost in its entirety by NINDS, a very unusual move by the NIH which had not funded that many clinical trials. By the way, the NASCIS trials were the first double-blind randomized clinical trials for therapies of spinal cord injury.
3. Pharmaceutical Companies. Before 1995, I don't know of any major pharmaceutical company that invested in spinal cord injury research except for Upjohn Company. Now called Pharmacia-Upjohn, this company invested significantly in acute spinal cord injury research, in part because of two scientists in the company (Edward Hall and Mark Braughler) who believed strongly that therapies can be devised for acute spinal cord injury. They have consistently funded activities in the field, including the Neurotrauma Society and the International Neurotrauma Society, which allowed spinal cord and head injury scientists to get together annually to discuss their results. Many collaborations and seeds of therapeutic ideas germinated as a result of these meetings. For example, Upjohn put up to $50,000 a year for the annual neurotrauma meeting and $150,000 every other year for the International Neurotrauma Society. Other companies that funded these meetings included Bayer Pharmaceutical (in part because they had a strong interest in head injury therapies), Fidia Pharmaceutical (because they were interested in GM1). In recent years, more companies have been contributing to the field, including Acorda Therapeutics, Smith-Kline-Beecham, Novartis, and Johnson & Johnson.
4. General Foundations. Perhaps the first major foundation to invest seriously in spinal cord injury research is the W. M. Keck Foundation. For example, when they funded our center at Rutgers, it was the first time that they have ever funded a "cure" related effort and their gift of $2.1 million to construct our center was the largest award to any East Coast University. They have subsequently funded John MacDonald's transplantation center at Washington University in St. Louis. I hope that they are planning more investments of this type. Unfortunately, there are few other major foundations that have shown an interest (see below)
5. Universities. While universities are typically not considered funding sources, several universities have played a critical role in the creation and maintenance of spinal cord injury research. Thus, for example, the University of Miami put up the money to initiate the Miami Project and probably took a loss on the Project for a number of years before its fundraising and NIH funding became self-sustaining. Places like the University of California at Irvine likewise have invested to bring in scientists and to provide space for the Reeve-Irvine Center. Rutgers University has invested significantly to bring the W. M. Keck Center for Collaborative Neuroscience into existence.
Who have not supported spinal cord injury cure research? I don't think that any major insurance company has funded spinal cord injury research. To my knowledge, other than the Keck Foundation which is #30 in the country in terms of assets, none of the top 100 foundations in the United States have invested significantly in spinal cord injury research (see List of 100 Largest U.S. Foundations (http://fdncenter.org/research/trends_analysis/top100assets.html). Finally, with the exception of a few of the companies listed above, very few major companies have invested in support of spinal cord injury research.
Please add to this list, if possible. I am just listing organizations off the top of my head and may have missed important contributors. Thanks.
1. Cure-oriented Foundations. These are mostly organized by people and families with spinal cord injury, i.e. Christopher Reeve, Paralyzed Veterans, Kent Waldrep, Chuck Carson (Spinal Cord Society), Marc and Nick Buonocanti (Miami Project), Danny Heumann and family, Fran Brown and Family, Peter Morton and Family, Joan Irvine-Smith, and many others. There are several overseas foundations, such as the International Spinal Research Trust (IRST). Each of these foundations have small groups of major donors who have been motivated by altruism or contact with people with spinal cord injury.
2. The National Institutes of Health (NIH). Normally, I would not include NIH as a "supporter" of a field. However, in the 1970's and 1980's when there was tremendous pessimism about the possibility of a cure for spinal cord injury, a few people in the leadership of NIH, particularly Murray Goldstein who eventually headed the National Institutes of Neurological Diseases and Stroke (NINDS) worked hard to promote research in the field. I know because I was a recipient of several NIH grants, including a Jacob Javits award in the 1980's, that gave me the start in the field. Likewise, the National Acute Spinal Cord Injury Study (NASCIS) was funded almost in its entirety by NINDS, a very unusual move by the NIH which had not funded that many clinical trials. By the way, the NASCIS trials were the first double-blind randomized clinical trials for therapies of spinal cord injury.
3. Pharmaceutical Companies. Before 1995, I don't know of any major pharmaceutical company that invested in spinal cord injury research except for Upjohn Company. Now called Pharmacia-Upjohn, this company invested significantly in acute spinal cord injury research, in part because of two scientists in the company (Edward Hall and Mark Braughler) who believed strongly that therapies can be devised for acute spinal cord injury. They have consistently funded activities in the field, including the Neurotrauma Society and the International Neurotrauma Society, which allowed spinal cord and head injury scientists to get together annually to discuss their results. Many collaborations and seeds of therapeutic ideas germinated as a result of these meetings. For example, Upjohn put up to $50,000 a year for the annual neurotrauma meeting and $150,000 every other year for the International Neurotrauma Society. Other companies that funded these meetings included Bayer Pharmaceutical (in part because they had a strong interest in head injury therapies), Fidia Pharmaceutical (because they were interested in GM1). In recent years, more companies have been contributing to the field, including Acorda Therapeutics, Smith-Kline-Beecham, Novartis, and Johnson & Johnson.
4. General Foundations. Perhaps the first major foundation to invest seriously in spinal cord injury research is the W. M. Keck Foundation. For example, when they funded our center at Rutgers, it was the first time that they have ever funded a "cure" related effort and their gift of $2.1 million to construct our center was the largest award to any East Coast University. They have subsequently funded John MacDonald's transplantation center at Washington University in St. Louis. I hope that they are planning more investments of this type. Unfortunately, there are few other major foundations that have shown an interest (see below)
5. Universities. While universities are typically not considered funding sources, several universities have played a critical role in the creation and maintenance of spinal cord injury research. Thus, for example, the University of Miami put up the money to initiate the Miami Project and probably took a loss on the Project for a number of years before its fundraising and NIH funding became self-sustaining. Places like the University of California at Irvine likewise have invested to bring in scientists and to provide space for the Reeve-Irvine Center. Rutgers University has invested significantly to bring the W. M. Keck Center for Collaborative Neuroscience into existence.
Who have not supported spinal cord injury cure research? I don't think that any major insurance company has funded spinal cord injury research. To my knowledge, other than the Keck Foundation which is #30 in the country in terms of assets, none of the top 100 foundations in the United States have invested significantly in spinal cord injury research (see List of 100 Largest U.S. Foundations (http://fdncenter.org/research/trends_analysis/top100assets.html). Finally, with the exception of a few of the companies listed above, very few major companies have invested in support of spinal cord injury research.
Please add to this list, if possible. I am just listing organizations off the top of my head and may have missed important contributors. Thanks.