Rare Neuroimmunologic Disorders Symposium
The Johns Hopkins Project Restore and The Transverse Myelitis Association
August 19 – 22, 2004 Baltimore, Maryland

The Science Program was held on August 19-20, 2004. The concurrent Clinical Program took place on August 19-22, 2004. The 2004 Rare Neuroimmunologic Disorders Symposium drew the leaders in both the research and the clinical care of patients who have the neuroimmunologic disorders of the central nervous system. The science and clinical program presenters were truly exceptional. There were approximately 100 scientists and physicians who attended the symposium. There were approximately 150 people from the patient population who were in attendance. About three-quarters of the people from the patient community indicated that they were meeting someone else with their condition for the first time during the symposium. For all of these people, people with the conditions and their caregivers, the symposium was an overwhelming emotional experience. The scientists had the opportunity to share their research and clinical experiences. The patient population heard presentations, which summarized this research and directed the information toward a lay audience. Learning about the important strides that are being made in this research is a critical component of the great hope our community is able to feel for the future.

The clinical program was attended by physicians and medical specialists who received CME credits through Johns Hopkins, as well as many people from the patient community and their caregivers. The program represented a comprehensive and thorough discussion of the spectrum of neuroimmunologic disorders, including TM, recurrent TM, ADEM, and Neuromyelitis Optica. Special attention was also given to the differences between adult and pediatric cases and treatments of these disorders.

The presenters provided the audience with an excellent introduction regarding the anatomy of the central nervous system, and also offered an excellent description of the immune system. There were two full days devoted to presentations covering all of the symptoms, which are experienced with the neuroimmunologic disorders. Each presentation provided an explanation of the physiologic cause of the symptom, and then offered the full range of symptom management options that are available for that particular set of symptoms. The presentations also included an extensive treatment of the socioemotional, psychological, and familial issues which surround having these neuroimmunologic disorders.

In addition to the formal presentations and the question and answer segments of these sessions, there were numerous opportunities for the patient population to interact with the physicians and scientists. All of the meals were shared in one large banquet room, and the physicians, researchers, patients and caregivers were mixed at the tables. Our experience has been that these interactions are among the most important events that take place at our symposia. These interactions help to humanize and personalize the diseases for the researchers and physicians. These are highly emotional and poignant experiences for the medical professionals and can also provide tremendous motivation and purpose for their work. The patient community derives tremendous benefit from these interactions, as well. There is wonderful catharsis derived from being able to share their experiences, and they have the opportunity to seek information about their own cases from the professionals who have the greatest understanding about their rare conditions. The patient population receives great emotional support and hope from these discussions with the medical community.

On Saturday afternoon, at the conclusion of the formal clinical program sessions, there were two sets of breakout sessions held in which the patient and caregiver population was provided the opportunity to have group discussions led by a professional expert. The topics covered in these sessions included, returning to work and school, pain management, managing sexual dysfunction, treatment of depression, treatment of spasticity, and positive growth in the face of adversity. One of the physiatrists from our Medical Advisory Board also held a wheelchair clinic in which he offered personalized guidance to patients who attended. Finally, the entire Sunday morning program was devoted to a discussion and question and answer session between the patient and caregiver community and the TMA Medical Advisory Board.

The Transverse Myelitis Association currently has more than 5300 members from every state in the United States and from more than 80 countries around the world. Due to the costs involved in travel and the economic devastation surrounding having a serious illness and disability, most of our membership is not able to attend our symposia. Our Association is devoted to providing information and educational opportunities to ALL of our members around the world. All of the clinical presentations were videotaped during the symposium. The sessions will be posted on our web site as streaming video. In addition to the streaming video, all of the handouts and the presenter’s powerpoint presentations will be available on our web site as pdf files. There is also streaming video available of the welcoming speeches, the keynote speeches during the banquets and the ceremonies and dedications that took place during the symposium.

All of this information may be accessed through our web site by clicking on the link symposia and workshops from the main page; or you can go directly to:

http://www.myelitis.org/rnds2004

Numerous photographs from the symposium are also available on our web site. We are so grateful for all of the work that Jim does to make this information available to our community and to the physicians and medical professionals who have an interest in the rare neuroimmunologic disorders. We would also like to thank Winston, Michelle and Chris Powell from Tullyvision for the excellent work they performed taping the symposium and preparing the materials for posting on our web site and for distribution to our members.