Uniting Scientific and Patient Communities to Create Knowledge about Transverse Myelitis

Rare diseases require novel approaches to facilitate scientific study.  The Transverse Myelitis Association (TMA) has partnered with Consano, a non-profit crowdfunding platform for medical research, to unite scientific and patient communities to advance our knowledge of transverse myelitis (TM).  Consano utilizes a “crowdfunding” platform, a novel and exciting mechanism to enable individuals to donate directly to specific medical research projects and engaging and empowering  the patient community served by the research efforts.  There are many needs in the TM community and the TMA reviewed several proposals for this endeavor, ultimately selecting the research proposal led by Dr. Lana Harder of Children’s Medical Center Dallas (CMCD) and the University of Texas Southwestern Medical Center (UTSW) entitled, “Utilizing Brain Imaging to Understand Cognitive Dysfunction in Transverse Myelitis.” Dr. Harder’s previous work with her team at CMCD and UTSW has uncovered cognitive problems (i.e., deficits in memory and attention) in patients affected by TM, suggesting brain involvement, a finding that has been surprising given that the focus of TM research, assessment, and treatment has been on the spinal cord.  Findings from the cognition study have led researchers to seek a deeper understanding of the potential impact of TM on the brain and challenged our current knowledge of the central nervous system injury associated with TM.

Utilizing brain-imaging techniques, not routinely performed as part of standard clinical care, Dr. Harder’s study will determine if there is damage to the brain, previously not identified, in patients with TM.  This study has the potential to change our understanding of the biology involved in TM, identify new areas of immune-mediated damage, and broaden the scope of current assessment and treatment methods.  Through research, we are able to create knowledge that will inform our interventions to improve the quality of life for the patients and families we serve.

There is much to be discovered, but the discoveries will not come solely from physicians and scientists.  Studies like these are not possible without the partnership and support of our patient community.  We are privileged to have the opportunity to join forces with our patients to advance our understanding of this rare disease.

~ Benjamin Greenberg, MD, MHS & Lana Harder, PhD, ABPP

We have just 55 days to raise the funds to support Dr. Harder’s critically important study.  Please help us to make this project a success by going to the Consano website (https://www.consano.org/projects/51-utilizing-brain-imaging-to-understand-cognitive-dysfunction-in-transverse-myelitis) and donating to this groundbreaking work.  You are all acutely aware of the need for research on TM. This study and the Consano approach offers all of us this very unique opportunity to make a significant difference for ourselves.  If you have family and friends that would be interested in supporting this work, be sure to share this information with them, as well.