Frank Loth is Biking to Support Chiari Research

I don't have Chiari malformation (CM), but rather I conduct research to obtain a better understanding of CM.  I first learned about CM in 1998 when I was an Assistant Professor researching biological fluid dynamics at the University of Illinois at Chicago.  Little did I know at the time, that in the years to come, my research interests would end up focused on CM.  In 1999, Rick Labuda found me online and contacted me about his strong interest in increasing CM research.   In particular, Rick wanted to increase research conducted by basic scientists to compliment the research being done by clinicians.  At that time, he encouraged me to attend patient conferences which I did each year for the following 9 years and learned a tremendous amount about CM. In 2008, I moved to the University of Akron as the F. Theodore Harrington Endowed Chair in the Mechanical and Biomedical Engineering Departments and began to focus my research more on CM.  In 2012, we established the Conquer Chiari Research Center (CCRC) at the University of Akron for which I serve as the Executive Director. All CCRC research is conducted by basic scientists precisely as Rick Labuda had envisioned. The CCRC has faculty, staff, and students who are dedicated to conducting research focused on CM, syringomyelia and related disorders. 

In a short time, this group of 10 faculty has become a world leader in the area of CSF hydrodynamics, Chiari malformation, and syringomyelia with 50 peer reviewed journal papers published since 2012. The funding from Conquer Chiari has been critical to our success.  Recently, we obtained an NIH Research Grant for $470,000 entitled “Novel MR Image Processing as an Objective Diagnostic Test for Chiari Malformation.”  The CCRC research team has expertise in many different areas including mechanical engineering, biomedical engineering, molecular biology, psychology, education, chemistry, biology, and statistical analysis. We work closely with surgeons throughout the US from many of the country’s top institutions (Emory University School of Medicine, Cleveland Clinic Foundation, Harvard Medical School, University of Chicago Medicine, University of Michigan Medical Center, National Institutes of Health and The Johns Hopkins Hospital just to name a few…). 

What is CM?

Chiari malformation Type I (CM) is a serious neurological disorder currently defined by a midsagittal tonsillar position of the cerebellar tonsils of at least 5 mm below the foramen magnum. See Conquer Chiari’s website for images that describe this herniation.  This tonsillar descent leads to compression of the brainstem and cervical spinal cord and disruption of the natural flow of cerebrospinal fluid. The most common symptoms associated with CM are chronic headache, neck pain, balance problems, and cognitive issues. 

How many people get CM?

Approximately 300,000 individuals in the US are diagnosed with symptomatic CM. However, there are limitations to the current diagnostic definition of CM. First, although CM is defined by the extent of tonsillar herniation, >10 times more individuals show cerebellar tonsillar descension (tonsillar ectopia) than exhibit CM symptoms (over 3% of children and 1% of adults show tonsillar ectopia). This makes diagnosis difficult.

How can we improve this situation?  

In short, more CM research.  

That is why I am asking you to donate to Conquer Chiari for this Cycle4Chiari fundraising event.  Full disclosure, the funds donated to Conquer Chiari are often used to fund CCRC research projects  at the University of Akron and thus, these funds can make their way to my lab although it is Conquer Chiari that makes all funding decisions.  

I encourage you to read about the many important research discoveries that have been made possible by Conquer Chiari at:

https://www.conquerchiari.org/about-us/conquerchiari.asp

This organization has worked tirelessly since its inception in 2004 to improve the experiences and outcomes of Chiari & syringomyelia patients.  

Simply put, Conquer Chiari is an amazing organization, please donate to Conquer Chiari. I plan to ride my bike 200 miles between July 3rd and July 12th, 2020 in support of Conquer Chiari in the hope that one day we will find a cure.

Frank Loth