The Transverse Myelitis Association has been assured that the Rare Neuroimmunologic Disorders Symposium will NOT be canceled for any reason. Please register for the symposium as soon as possible. The symposium registration fee has been significantly reduced to help families attend who might not otherwise be able to afford the cost. Please also make your hotel reservation as soon as possible. Thank you!
Since Pauline got TM in 1994, she has received exceptional medical care. Her excellent medical care is accounted for in part because she has excellent physicians. Pauline and I believe that her exceptional care is also, in large part, accounted for by our efforts to learn as much as possible about her disorder and also to understand what causes her symptoms and to learn about the most effective ways to treat them. This education has significantly impacted our expectations about the treatments that are provided to Pauline, and we have become full participants in the specific care that is provided to her. Pauline is most definitely a partner with her physicians in the care and treatments that she is offered. The greatest part of our education has come from the symposia we have attended and weve gone to every single one. Even if we werent involved in organizing these meetings, we would never miss this education program. There are so many changes over a two year period (the amount of time between our symposia) what is learned about these disorders, what is learned about rehabilitation therapy, and the development of new medications and procedures. There is always so much to learn. And we leave each symposium as better advocates for Paulines medical care. If you have NMO, the symposium is going to include presentations about long term therapies. The physicians and researchers who have the best understanding of ADEM, NMO and TM are going to be at this meeting. You will have both informal and formal opportunities to talk with these physicians at our meals and during question and answer sessions. There will also be breakout sessions where you can be involved in a less formal, more conversational discussion about various symptom issues, from the treatment of depression and nerve pain to the best ways to select the right orthotics or wheelchairs or other adaptive devices.
When Pauline got TM in 1994, we embarked on a very lonely and frightening journey. Our ignorance about Paulines condition made this journey extremely difficult. But it was our isolation in this experience that intensified our challenges. Pauline and I attended our first meeting of people with TM in 1997 and then we attended the first TMA symposium in 1999. We have met so many people at these symposia and we have made lifelong friendships. When Pauline is having a particular problem, she calls her friends and she discusses her issues with them. There is tremendous comfort in knowing that you are not on this difficult journey alone. We have witnessed the development of these friendships over and over again through our symposia. These lifelong emotional and social connections have been far more worth the price of admission!
I know that there are people who just do not have the financial means to make this trip to Dallas. We are really sorry for your circumstances. You are our motivation to making sure that the presentations are posted on our web site after the symposia. There are others of you who just cant make the trip because of the challenges you face through the travel experience. For instance, Jim isnt able to attend our symposia unless they are held in Seattle, because it is just too difficult and expensive to transport Jim with his ventilator equipment.
For most people with ADEM, NMO and TM, this trip is possible. If you havent seriously considered coming to Dallas, please do so. If you received your diagnosed within the past two years, you have the most to gain from this educational and networking experience. If you have never been to a symposium, you owe it to yourself to attend. If you are a parent of a child with ADEM, NMO or TM, there will be pediatric specialists making presentations; I have no doubt in my mind that you would benefit from attending, listening to the presentations and asking your questions.
If you live in or near Dallas or you live in Texas you need to be at this symposium!!!!
I hope that Pauline and I will have the opportunity to meet you in Dallas next month. I know that your presence at this symposium will change your life all for the better.
Take care and be well.
Sandy Siegel
