$15,014 Raised
"There is much to be discovered about Transverse Myelitis, but the discoveries will not come solely from physicians and scientists. Major advances in this field require collaboration with patients and families. I have learned more from those I treat than from any paper or textbook."
— Benjamin Greenberg, M.D.

Lana Harder, Ph.D.

Associate Professor, Psychiatry, Neurology & Neurotherapeutics
UT Southwestern

For a rare disease, transverse myelitis has been remarkably present in my educational experiences. As a psychology undergraduate student in 1997, I met a fellow student, Jake, who had been affected by TM, resulting in quadriplegia. I was surprised that I had never heard of this condition, especially given its potential to produce such sudden and devastating symptoms. I was so moved by Jake's story that I chose TM as the topic for my next college paper assignment. At that moment, there was no way of knowing that 10 years later, I would become part of a team studying this condition. My paper focused more on human resiliency in the face of overwhelming adversity than on the condition itself. I was most struck by Jake's seemingly endless motivation to take on challenges including those associated with TM as well the usual challenges associated with college. I met similar patients affected by TM during my graduate school studies at the Kennedy Krieger Institute/Johns Hopkins School of Medicine. In 2009, as a new faculty member, these experiences led to my excitement to join a newly established clinic at UT Southwestern/Children's Medical Center of Dallas focused on rare demyelinating diseases, such as TM.  Daily interactions with our patients and families drive my research questions and motivation to seek answers. While we have come a long way in the field since 1997, we have much to learn. Working in a multi-disciplinary team enhances my ability to create knowledge about a rare and poorly understood disease in order to provide the very best evaluation and treatment methods for the patients we serve.

I am a neuropsychologist and my work is dedicated to understanding the connection between the brain and cognitive functioning in the context of central nervous system demyelinating disorders such as TM.  My goal is to better understand the underlying mechanisms that result in cognitive problems, as these interfere with daily functioning (i.e., learning, school and work performance) and threaten one’s quality of life.  Through research, we are able to create knowledge that will inform our interventions to improve the lives of the patients and families we serve.  Our team recently published the first paper on cognitive dysfunction in TM (Harder et al., 2013).  This work has challenged our understanding of the CNS injury associated with TM and gives us the foundation for further investigation of the underlying mechanisms associated with cognitive dysfunction in TM.

Benjamin Greenberg, M.D.

Associate Professor, Neurology & Neurotherapeutics, Pediatrics
UT Southwestern

In medical school, I had less than 5 minutes of lecture time on TM. It wasn’t until my residency at Johns Hopkins that I met my first patient affected by TM. I remember the day, after his 4th plasma exchange treatment, that he wiggled a toe – it was his first movement below the waist, in 2 weeks. There were cheers and tears. Most importantly, there was hope.

At Johns Hopkins, I made a career decision. I would join the TM Center and focus on the diagnosis and care of patients with rare neuroimmunologic disorders. There are many areas of medicine that are fascinating and in need of work, but I found a special affinity for patients and families affected by TM. There is much to be discovered, but the discoveries will not come solely from physicians and scientists. Major advances in this field require collaboration with patients and families. I have learned more from those I treat than from any paper or textbook. Within the TM community I have found a group of patients and families that share our dedication and vision. Working together I am convinced there is nothing we cannot achieve.

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Summary

Transverse Myelitis (TM) is an autoimmune condition that affects the spinal cord.  It classically can cause weakness, loss of sensation, pain and bowel or bladder dysfunction. It has historically been separated from multiple sclerosis and acute disseminated encephalomyelitis by the fact that only the spinal cord is affected, presumably leaving the brain undamaged. This description of the disease is based on MRI images of patients acquired as part of clinical evaluations that show a lack of damage to the brain.

In 2012, for the first time, our team at UT Southwestern and Children's Medical Center Dallas identified a significant number of TM patients with evidence of cognitive dysfunction in areas such as attention and memory.  Such cognitive dysfunction has the potential to interfere with daily functioning (i.e., learning, school and work performance) and threaten one’s quality of life.  Findings from this study raised a concern for unrecognized brain-based damage in patients with TM.  It has been known for some time that MRI techniques do a poor job of visualizing changes within the cortex – the outer lining of the brain. We hypothesize that TM patients with cognitive dysfunction may have experienced cortical damage that are not readily apparent on normal MRIs.

This study will acquire brain MRIs on 10 TM patients and 10 sibling controls, ages 8 to 18 years, with special techniques to image the cortex. The objectives of this study include imaging the cortex of patients with TM and secondly, correlating imaging findings with cognitive functioning as measured by standardized neuropsychological tests.

Why is this important?

This study will determine if there is damage to the brain, previously not identified, in patients with TM. This knowledge will dramatically advance our understanding of TM, which was once thought to be an isolated spinal cord disease.  If discovered, evidence of brain-based damage will highlight the potential for diffuse immune-mediated injury to the central nervous system (CNS) in the context of events that superficially appear focal.  It will also highlight the need for improved evaluation methods, particularly as they relate to brain imaging protocols.  Documenting neurological changes in the context of TM will allow for a proactive approach to testing and treatment to promote the success of patients as they return to work or school.  This study has the potential to change our understanding of the biology involved in TM, identify new areas of immune-mediated damage, and change the way we assess and treat patients.

Who will benefit?

Individuals diagnosed with TM and their families.

Budget

Donations to this Consano crowdfunding project will be used as follows: