Announcing the 2004 Symposium in Baltimore
Sandy Siegel

The Transverse Myelitis Association and the Johns Hopkins Transverse Myelitis Center are co-sponsoring the 2004 Symposium on the Neuroimmunologic Diseases of the Central Nervous System. The symposium will focus on TM, Devics and ADEM, and will include both pediatric and adult cases of these neuroimmunologic conditions.

The symposium will be held at the Hyatt Regency at the Inner Harbor in Baltimore from Wednesday, August 18 through Sunday, August 22. Members of the TMA are going to get a rate of $115 plus tax per night for a single or double occupancy room at the Hyatt. For planning purposes and also to accommodate the Hyatt, we are asking our members to make their reservations as quickly as possible. The Association, the JHTMC and the Hyatt are going to require some sense of the size of our attendance to plan for meeting space. While we are hoping that they will have sufficient space for us, it is possible that we would have to limit the numbers of people who can attend the symposium. The one certain way for us to avoid any limitations is to have people make reservations at the hotel by January 2004.

To make a reservation at the Hyatt, please call (800) 233-1234. To get the TMA membership rate, please identify yourself as a member and let the customer service person know that you are attending the TMA/JHTMC Symposium. By making your reservation, your credit card will not be charged in advance of your stay. The Hyatt does, however, have a cancellation policy and you would have at least a week to cancel this reservation before the symposium.

The Hyatt has thirteen accessible rooms and only three of the 13 rooms have roll-in showers. Please do not ask for an accessible room unless it is absolutely necessary that you have one. If you need an accessible room, please indicate that need when you make your reservation. At the time you make your reservation, you are going to be given a room that is not accessible, to be certain that you obtain a reservation, and then you will be placed on a list that will ultimately be given to the JHTMC and the rooms are going to be assigned on the basis of the greatest need. If you can travel with a companion who is able to assist you with transfers, please consider doing so. We are sorry for the inconvenience this may cause any of you. We are trying to find an equitable solution to a difficult problem. If you are going to request an accessible room, you need to make your reservation before April 1, 2004; the list of requests will be given to the JHTMC on April 1st. The accessible rooms at the Hyatt will not be available after April 1st. Please be certain to communicate any other needs you may have, such as for a shower bench, at the time you make your reservation.

It is important to bear in mind that making your reservation at the Hyatt is a different process and fee from the symposium registration. The registration process will begin in the winter or early spring; you will receive the registration materials by mail in the next newsletter or in a separate mailing from the Johns Hopkins Continuing Medical Education (CME) Office. The registration fee will be set based on the costs of conducting the symposium.

We wanted to provide you with some idea of a possible registration fee so that you were able to decide whether you should make the hotel reservations.Based on a guess of 200 TMA members attending the symposium, the registration fee would be approximately $300 per person.If our fundraising efforts do not succeed in raising anything, the registration fee could be more or less than this amount depending on the numbers of people who register to attend.If we are able to raise a lot of money, the registration fee could be a great deal less.

The symposium is an educational and networking opportunity for people who have the neuroimmunologic conditions and their caregivers, for the medical professionals who provide treatment to this rare disease population, as well as scientists and physicians who are performing research in rehabilitative and restorative therapies. Presentations will be made by a group of physician specialists focused on the full range of symptom management issues of concern to the TM, Devics and ADEM community. The goal of this section of the program is to assist the person to become an informed and effective advocate for their treatment and medical care. In addition to the many physical symptoms people need to address, they are also faced with significant social and emotional issues, which surround having a devastating illness. The symposium will also attend to these important issues through presentations by experts from a variety of medical and other disciplines.

In addition to the formal presentations, there will be extensive opportunity for TMA members to ask questions of the specialists. An entire session will involve a discussion and question and answer program which will include the patient and caregiver community and the medical specialist community.

The symptom management section of the symposium will be the focus of approximately half of the program. The other half of the program will be devoted to the science and research on the neuroimmunologic disorders and restorative therapies. While the science and research portion of the program is of primary interest to the physician/scientist participants, it is equally beneficial for the TMA membership. It has been our experience that knowledge of the research is an important component of how we all think about the potential for improved quality of life for ourselves and our loved ones. A major portion of the program is devoted to rehabilitative and management strategies, as the TMA is committed to the highest quality of life for people who suffer from these neuroimmunologic conditions today. The current state of research, however, represents the future potential for a better and significantly improved quality of life.

As these are rare conditions and there is no concentration of people in any community around the country or around the world, most of those with these neuroimmunologic conditions have never met another person who shares their disorder. We are sensitive to the needs of bringing together people with the rare neuroimmunologic conditions and their caregivers to offer them the opportunity to share in their experiences, to help people feel less isolated, to foster social support and networks, and to provide critical information to help people better understand their conditions. We know from the previous meetings that most people create lifelong friendships at these gatherings. There will be numerous opportunities for people to meet and socialize.

The symposium program has also been designed to encourage and maximize the interactions between the medical community and the patient and caregiver communities. This interaction will be promoted both in a formal setting with discussions and question and answer sessions, as well as in more informal settings during social activities and meals. Physicians learn a great deal about the personal experiences of the people who have these conditions through these informal connections.

The TMA/JHTMC Symposium will be offering CME credits through the Johns Hopkins Continuing Education Program. From the patient and advocacy perspective, this represents a tremendous opportunity to attract interested medical professionals and scientists into an important area of treatment and research. This educational opportunity will result in the sharing of best practices in treatment, as well as provide the synergies that result from the scientists sharing new information, techniques and research results.

The TMA and JHTMC are also strongly committed to better educating the first line of defense in the diagnosis and treatment of these neuroimmunologic disorders. Emergency physicians, general practitioners, and pediatricians are the physicians who first see a patient who is presenting with the symptoms of TM, ADEM, and Devics. A rapid diagnosis and treatment is critical for the patient. The TMA and JHTMC will promote the educational program to these medical specializations in an attempt to increase awareness and to better educate these disciplines about diagnostic techniques.

If you have not attended a previous TMA/JHTMC Symposium, we strongly urge you to participate in this important event. If you have attended other workshops and symposia, the 2004 meeting will offer you the opportunity to learn about the most up-to-date symptom management strategies and research and to renew your friendships from the TMA membership. This is also an important opportunity to meet the physicians and scientists who are focused on the neuroimmunologic conditions.

The TMA and the JHTMC have already begun the fundraising efforts for the 2004 symposium. We need for you to get involved! There are three levels of fundraising in which I am going to encourage you to participate. The first level is the formal fundraising program that is being directed by the TMA and the JHTMC. This effort is being coordinated by Chitra Krishnan from the JHTMC and by Stephen Miller and myself from the TMA. If you would like to assist in these efforts, please contact Stephen. You can reach Stephen by email at: smiller[AT SIGN]myelitis.org or call (937)453-9832.

The second level of fundraising involves the activities that our membership regularly engages in to raise money for the TMA operating expenses and for TM research. There are hop-a-thons, hoop-a-thons, roll-a-thons, read-a-thons, dinner parties, auctions, raffles, golf outings and many other programs going on all the time around the country and around the world. Amazing, kind, and generous people take the personal responsibility to perform these wonderful deeds. Often, we don't even hear about these events until after they have been completed. To say that we are grateful for these efforts is the greatest of understatements. We need for more people to get involved in more of these efforts and please direct the funds to the 2004 symposium. This can be easily accomplished by writing "2004 symposium" on the checks or in a letter accompanying the checks that are sent to the TMA. Paula will be sure to designate these funds for the 2004 symposium. All funds that are raised above the costs of the symposium will be designated to the TMA research fund. The TMA and the JHTMC are fully committed to encouraging research on the neuroimmunologic conditions and to attracting the best physicians and scientists into this area of research.

The TMA and JHTMC will determine the registration fee in January 2004 and the fee will be set to cover the total cost of the symposium. Our fundraising goal is to raise enough money so that there is no registration fee and so that there is a substantial amount of money designated for the research fund. We would love to have the only cost for our membership be their travel and hotel and a few dinners during the symposium weekend. Whether we can realize that goal is going to depend on you. We are going to commit hundreds of hours to raising money and to applying for foundation grants. There are no guarantees that these efforts will result in raising anything. Our most effective fundraising efforts are those that are conducted by our members who do their fundraising in their local communities and with their family and friends. These are the people who care most about TM; these are the only people who know anything about these neuroimmunologic conditions and how they have impacted our lives.

There was no registration fee for the TMA Childrens and Family Workshop that was held in Columbus, Ohio in the summer of 2002. All of the costs of the workshop were covered from fundraising. The vast majority of money was raised by the parents in their fundraising efforts with their family and friends. I accomplished the same goals by fundraising with Pauline's and my family and friends.

Please get involved in fundraising efforts. Help us provide this important opportunity to the many deserving people in our community who need this education and support. By reducing or eliminating a registration fee for the symposium, we will widen the numbers of people who are able to attend.

The final level of fundraising I would like for you to consider is fundraising with your family and friends to help you cover your personal costs for travel and the hotel. We have members from across the United States and from around the world. Whether you live in India or Brazil or Australia or Alaska or San Francisco or Chicago, you should be able to attend this symposium. You need to begin today to fundraise with your family and friends. If they know how important it is for you to come to this symposium, they will want to help you. If you are not comfortable asking for financial help, hold a personal fundraiser to cover your travel and hotel costs. You can hold a bake sale in your church or find some other creative ways to raise the money to make this happen for you. We have such a difficult time asking for help in America. Please don't let your pride interfere with the opportunity to have this life changing experience for yourself. If you have never met another person who has your condition, you owe it to yourself to find the support, compassion and understanding that you will only find from others who have been through this same experience.

If you are looking for information about how to get involved in fundraising or what sorts of things you can be doing, please go to the donations page on the TMA web site. There is a great deal of information about the TMA and about fundraising on this site. Also, you can get some great ideas for fundraising activities from the newsletters, all of which are posted on the web site.

Please get yourself motivated to make this enormous difference for yourself and for others who share in your experiences. Please help me make this opportunity available to as many people as possible by keeping the registration fee as low as possible. Please, let's make this an opportunity to get seriously energized to raise money for TM research.