Photos: Billy Bobs, Doug and Pauline, Sandy and Ben

Visit to the TM and NMO Center at the University of Texas Southwestern and the TMA Planning Meeting 

Dr. Benjamin Greenberg established the TM and NMO Center at the University of Texas Southwestern.  When he moved from Johns Hopkins, Maureen Mealy, Megan Quigg and Stephanie Taylor joined him in Texas.  Maureen is his nurse and is involved in Dr. Greenberg’s research projects, as are Megan and Stephanie.  Megan and Stephanie are also in the process of applying to medical school, and I am already promoting the many virtues of neuroimmunology. 

I suggested to the officers that it would be wonderful to make an official visit to the new center, and that we should invite Dr. Douglas Kerr to join us and hold a TMA planning meeting while in Dallas.  Dr. Kerr, Paula Lazzeri, her son, Jesse, Pauline, Kazu and I arrived on Thursday, July 9th.  We made our official visit to Dr. Greenberg’s center on July 10th and also held a planning meeting at the center.  Our visit continued throughout the day on Saturday.  It was a great meeting and a wonderful visit.  We accomplished so much and we had a great time.  Our discussions about issues that are central to our Association and our members went on all day and night for three days.  These discussions took place in the meeting room at the TM and NMO Center, but they also took place at the Dallas Aquarium, while driving all over the city in cars, trucks and vans, in Ben’s and Tasha’s living room, kitchen and swimming pool, in hotel rooms, at restaurants and at Billy Bob’s Bar and Rodeo.     
 
We planned the education program that was to take place at the TMA Family Camp in August at Victory Junction Gang Camp.  I had solicited topics from the parents during the summer that they would like addressed at the education sessions and I presented these to Drs. Kerr and Greenberg.  We discussed the subjects that would be covered by Drs. Kerr, Greenberg, Kaplin, Pidcock and Janet Dean during the three day morning program at camp.  In addition to the three two-hour sessions, Drs. Greenberg and Kerr suggested that Janet and the doctors offer to hold informal consultations in the afternoons during the rest times.  This turned out to be a wonderful idea and almost all of the families took advantage of this opportunity during our camp. 

We discussed plans to hold the next rare neuroimmunologic symposium in Dallas in 2010.  Dr. Greenberg and the University of Texas Southwestern offered to take a primary role in the organization and planning of this program.  We also discussed including patient education and research and science components to the program as we have done in the past with Johns Hopkins in Baltimore.   

We talked about the James T. Lubin Fellowship and how we would raise funds for and structure the fellowship.  We are all committed to growing the discipline and attracting TM-NMO-ADEM clinicians and scientists. 

We focused the largest amount of time and energy on discussing ways to further research into transverse myelitis and acute disseminated encephalomyelitis.  Due to the rarity of these disorders and the wide geographic distribution of cases, research might best be accelerated by establishing a consortium of physicians and medical centers to increase the numbers of patients being seen with these disorders and to conduct multi-centered studies.  The development of a multi-centered consortium would make possible research into the development of biomarkers and other ways to define these disorders so that we can better understand what might be causing them, i.e., what is the specific mechanism of disease.  These biomarkers would also make it possible to more rapidly diagnose these disorders and develop ways to measure the effectiveness of treatments.  Multi-centered studies would produce evidenced-based, scientific results that could guide physicians in their acute therapy decisions.     

I have been working with Maureen to compile a list of physicians who have experience treating TM or ADEM or NMO during the acute attack and also who have a clinical practice that can treat the many challenging symptoms of these disorders.  This has been a tremendously difficult task as our members are located across all of the United States and including some very rural areas of our country.  I am regularly contacted by people who are looking for a physician who has an understanding of these disorders.  Our primary objective is to identify physicians who have the experience to treat the acute episodes.  We continued our discussions at the meeting to further develop this list.     

We discussed the future of the TMA and how to sustain our organization and grow our opportunities into the future.  This was the most complex focus of our meetings as much of these discussions concern the transition of the Association from an organization composed entirely of volunteers to one in which people are paid to do some of the work.  While no decisions came out of these discussions, it is clear to all of us that we must sustain our organization; regardless of what happens to the people who are currently doing this work.  It is also abundantly clear to everyone that all of the goals we plan to accomplish are going to require that we raise the funds to pay for these programs, and that this will require a level of fundraising that the TMA has not yet managed in our 15 years of existence.    

The weekend was incredibly productive.  Ben and Doug are so devoted to our organization and to our community.  We are thrilled with the establishment of the new TM and NMO Center and we are so grateful to have both Dr. Greenberg and Dr. Kerr thoroughly dedicated to our cause.