May 20 2006 --

On May 1st, Conquer Chiari opened a new front in our battle by issuing a call for research proposals in the areas of Chiari, syringomyelia, and neuropathic pain.  We issued the call for proposals jointly with Column of Hope, another great non-profit working tirelessly against these diseases.

I am excited to say that already we have had a tremendous response from researchers.  Both established Chiari researchers and experts from other areas who are interested in tackling the Chiari problem have contacted me to express their interest and excitement.

In the end, research is our ultimate weapon against Chiari, and only through a sustained research effort can we hope to truly improve the experiences and outcomes of those affected.  Given its importance, we are not going to approach this effort haphazardly, and it is our stated goal to carefully develop a research agenda. 

While this large, difficult task is still underway, I wanted to share with you some of my personal thoughts on some of the major goals and objectives that I believe will provide a foundation and roadmap for success (note, I use the term Chiari below as a catch-all to refer to all the conditions related to Chiari):

Goal #1:  Reduce the average time to an accurate diagnosis to less than 2 years from time of first symptoms.

Objectives:

• Develop a standard, simple, objective definition and test of symptomatic Chiari

• Enable the introduction of new technologies, such as inexpensive, portable imaging, which will reduce the barriers to diagnosis

Goal #2:  Develop an effective, widely adopted, and minimally traumatic standard of care.

Objectives:

• Design, and encourage the adoption of, a standard outcome measure, such that the results from different studies can be compared and combined

• Establish whether the surgical variations that currently exist have a significant effect on long-term patient outcomes, and further develop a standardized surgical approach

• Encourage the development of minimally invasive surgical techniques

• Pursue non-surgical treatment approaches which don't just address symptoms, but are targeted at the core problem(s)

Goal #3:  Minimize the impact that Chiari has on the quality of life of patients.

Objectives:

• Develop, and encourage the adoption of, a Chiari Impact Measure, which takes into account patient focused issues such as career, family, economics, recreation, and socialization

• Understand, and develop treatments for, the neuropsychological effects of Chiari, including both cognitive and emotional manifestations

• Develop widely accepted protocols for physical, occupational, and other types of therapies designed to maximize functional capabilities

• Enable the development of innovative technologies and treatments targeted at the neuropathic pain and loss of function associated with Chiari

Goal #4:  Understand the pathophysiology, natural history, and epidemiological characteristics of Chiari.

Objectives:

• Establish, with reasonable accuracy, the incidence and prevalence of Chiari and Chiari related syringomyelia

• Characterize, and quantify, the Chiari experience, such as average age of diagnosis, time to diagnosis, number of doctors seen, major symptoms, etc.

• Develop a sound theoretical model for the pathophsyiology of Chiari, which explains how symptoms develop, and will enable predictions about who needs surgery, who will develop syringomyelia, etc.

• Identify and characterize the genetic basis of Chiari

While the overall goal of Conquering Chiari can seem daunting at times, with a cohesive strategy we can make major progress and maximize our limited resources. Over the summer we will work with our scientific team to finalize our research agenda and lay a roadmap for success.

The amazing thing is that for most, if not all, of the objectives above, there are already ideas about how to achieve them and researchers willing and eager to do the work.

At this point what is needed most, of course, is money.  Now is the time for everyone touched by these diseases to stand up and make a difference.  If everyone who reads this newsletter were to donate, or raise, just $100, we would be able to fund several research studies this year alone, and launch an opening salvo in our battle to Conquer Chiari.

** Don't forget, all money raised for research (up to $25,000) this summer will be matched dollar for dollar by an anonymous donor. **

--Rick Labuda

Back To Table Of Contents