Column of Hope
Chiari and Syringomyelia Research Foundation - Working toward a life without pain.
How We Help
It requires millions of dollars to complete a research study benefiting those with Chiari malformation, syringomyelia, neuropathic pain, spinal cord injury and related conditions. Past attempts to raise money at this level have met many obstacles. For instance, while the general public is aware of spinal cord injury, it is not aware of Chiari malformation, syringomyelia, neuropathic pain and many related conditions. Another issue is that there is no nationally or internationally recognized person representing this community.
Column of Hope has recognized these problems and is finding innovative ways around them. Column of Hope will not simply raise money for research. We will be involved with what is called Translational Research Services and Funding. This means implementing the research in the lab to medical treatments. Through our Board of Directors, we have a wide range of volunteers from the bio tech community. This team will lend its expertise in transitive research services and funding to assist the academic researchers in making the transition from lab work to treatments that will directly affect patients. These Column of Hope volunteers will help our researchers in the following areas:
- Government grant funding
- Project management
- FDA approval strategy
- Raising private equity
- Licensing related to technology
- Finding a business partner to commercialize the product
Another major problem is the lack of government funded studies. While neuropathic pain and spinal cord injury have many research studies funded by the NIH, there are no studies that look at how the above conditions relate to Chiari malformation and syringomyelia. In fact there are very few NIH funded studies concerning Chiari and syringomyelia. The NIH CRISP database shows that during the 2000 to 2005 fiscal years, only 7 studies were funded for Chiari malformation. For the same time period, only 4 studies focused on syringomyelia were funded. This is while 250,000 Americans have syringomyelia and/or Chiari malformation and 250,000 Americans suffer from a spinal cord injury. Bear in mind that some people with a spinal cord injury also have syringomyelia. It can be argued that these are small numbers in the grand scheme of things. However, the NIH funded 410 studies on cystic fibrosis in 2005 while only 30,000 Americans have the disease. This shows that more than enough Americans suffer from the conditions listed above to warrant NIH attention.
Column of Hope will make a voice in Washington and work to focus more government dollars on Chiari malformation, syringomyelia, neuropathic pain, spinal cord injury and related conditions. We would like to see funding in these individual areas, as well as in how these areas relate to each other. Again through contacts of the board of directors, we are working with leaders experienced in obtaining government grants. These leaders can help studies Column of Hope supports to obtain government grants. They can also help Column of Hope develop an advocacy plan to implement.