Welcome Address: Sandy Siegel

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Good morning and welcome to the Rare Neuroimmunologic Disorders Symposium.

The Transverse Myelitis Association made a commitment to bring our members together as often as possible for the purpose of providing information and support. We know that having a rare disease can be a very isolating and frightening experience. There is tremendous emotional benefit from being able to share with others who intimately understand your experiences. No one can quite comprehend what you have been through as well as the other people who are in this room. These meetings also provide us with the important opportunity to offer you information about your condition, as well as the latest management strategies to treat your symptoms. We know that you will leave here on Sunday as better and more informed advocates for your medical care.

I am very grateful for the physicians and scientists who are attending the symposium this weekend. We are very excited about what you are going to be learning from each other through your presentations and your informal discussions. Your interest and your research on the neuroimmunologic disorders give us great hope for the future.

The TMA and Johns Hopkins TM Center made a concerted effort to invite physicians and medical professionals who are treating people with TM, ADEM and Devic’s disease. We have also promoted the symposium to emergency physicians. For those who have come to learn, we are appreciative of your being here. We know that you will take away valuable information from both the presentations and from your interactions with the people from our very special community.

On Sunday, July 29 th 1994 at 5:30 in the evening, Pauline fell over to the floor with excruciating back pain and was immediately and completely paralyzed from the waist down. Her life, my life, and our children’s lives, were changed forever. Our experience with TM was like your experience. We got Pauline to an emergency room. The ER physicians, after hours and hours of tests, concluded that her symptoms were psychosomatic. It wasn’t until they finally realized that she was unable to urinate that a neurologist was called in. The neurologist wasn’t sure what was going on, but he understood enough to get Pauline on a high course of IV steroids. There was a week of numerous medical tests in the hospital and then the diagnosis of TM. As with all of you, we had never heard of it, and didn’t know anyone who had it. Pauline was admitted to Dodd Hall, the rehabilitation facility at Ohio State University. Pauline remained at Dodd for almost two months. She came home in a wheelchair. We still had no information about TM. We were anxious and concerned, primarily because we were ignorant. And being so ignorant made me angry.

A few months after Pauline got home from the hospital, we found Deanne Gilmur. Deanne was interested in starting a support group for people with Transverse Myelitis. Her daughter had developed TM at the age of 18 months. I offered to get involved. That was ten years ago.

The Transverse Myelitis Association is celebrating its 10th anniversary. Our work is dedicated to helping people so that, to the extent possible, they do not have to go through what we went through when Jim, Katie, Pauline, Paula, Debbie and Stephen got TM. Ten years ago, there was no network, there were no support groups, there was no TMA web site, there were no newsletters, there were no symposia and workshops, there was no internet club or bulletin boards, there was no medical advisory board, there was no Johns Hopkins TM Center, and there were no specialists in TM. There was almost no research on TM.

How life has changed for a person with TM in the past ten years. I receive phone calls almost every day from a recently diagnosed person who is searching for information. I am often called by a family member of a person who is still experiencing the acute onset of TM. They are looking for information about treatment and where they can find the best medical care. While I am talking to these people, it is never lost on me just how different our lives would have been if Pauline and I would have been able to make that phone call while she was in Riverside Hospital or Dodd Hall. We had no one to talk to and there was no information available about TM. The physicians often seemed as confused as we were.

When people hang up the phone after our conversations, they aren’t feeling great. But I know that the TMA has done a great deal to stem the ignorance and these people know that they are not on their journeys alone.

When I say that the TMA is celebrating our 10 th anniversary, I must qualify my use of the word celebrate. My work for the Association is a day-to-day experience filled with sadness, frustration, helplessness and grief. There are so many tragedies and there is so much suffering. I mourn daily for those who have lost their lives or for those who have taken their lives. I grieve for those who have lost the ability to breathe on their own, or have developed pain so horrible that physicians have not found a way to treat it, or who fight to have dignity in the face of losing control of their bladder and bowels. I suffer with those who have lost their ability to move or to walk and have lost some or all of their independence, or with those who have lost the emotional and sexual pleasures they shared with their partner, or who are depressed and can’t seem to find a way out of their darkness and are resistant to seeking the help they so desperately need. I grieve for those who have lost their ability to work, or have lost their ability to play, or have lost their homes, or who suffer through their illness without health care insurance or without medication or adequate medical care. And I suffer most with the children who get TM and with their families. There has been so much pain and suffering surrounding what we do.The heartache is sometimes just overwhelming.

In some ways, I feel like this all started yesterday.And in some ways, it feels like we’ve been at this for 100 years.

But there are also huge triumphs and joys on this journey.And that’s just how it is with life.Lots of nachas and lots of tsoris.Joy and sorrow.The grand cosmic balance.

The TMA has accomplished so much in the past ten years. In January 1997 the TMA had 187 members. Today, we have more than 5000 members from every state in the United States and from more than 80 countries around the world. We have support groups all over the globe. The officers of the TMA and the support group leaders are all volunteers. It is just an amazing and dedicated group of people. I want to thank all of the officers of the TMA for the incredible work they perform every day for our community.

Debbie Capen, Paula Lazzeri, and Stephen Miller. Debbie, Paula and Stephen do the work of the Association when they are not working at their jobs, or taking care of their families or attending to their homes and their lives. They also do the work of the Association while they are dealing with all of the complicated and difficult health issues they have from TM.

The only full time worker in the TMA is Jim Lubin. I would like to offer special thanks to Jim. At the age of 21, Jim suffered an inflammatory attack at the C1 C2 level of the spinal cord. Jim is a full quadriplegic and ventilator dependent. Except for some return of sensation, Jim has experienced no recovery. Jim is the heart and soul of the TMA. He works every single day of the year maintaining and expanding the web site, seeking information and finding new ways to share information; finding new and creative ways for us to communicate with each other, and searching for new ways to raise awareness and to raise funds. We have 5000 members because of Jim. Jim is in my mind and heart every day of the year. Even though he will not be in these rooms with us over the next four days, his presence will be felt by me and by everyone who has been so profoundly touched by his goodness, his kindness and his caring. We love you, Jim!

I want to thank the Medical Advisory Board for being here today and for all of the work you do for our community throughout the year: Chuck Levy, Joanne Lynn, Doug Kerr, Greg Barnes, Leslie Morrison, Jim Bowen, Adam Kaplin, Frank Pidcock, and Chitra Krishnan.

We are so grateful for the counsel and guidance you provide to the Association, but we are most appreciative of the excellent medical care you provide to the people in our community. We have the most wonderful group of physicians in our Association. They are excellent doctors, but they are first and foremost kind and caring human beings.

I also want to offer special thanks to Doug Kerr and Chitra Krishnan. Doug very directly and most profoundly has changed the lives of everyone who has TM or will have TM in the future when he started the Johns Hopkins TM Center.

Thank you, Cody and Shelley Unser. No one has done more to make the world aware of TM than Cody, and she is tirelessly dedicated to improving the quality of life for everyone in our community. Having gotten TM as a teen, it would have been perfectly understandable for Cody and her family to completely focus in on their own needs. Instead, Cody found a way to look beyond her own issues and opened her heart and her spirit to our entire community.

I would like to thank all of the support group leaders from around the country and from around the world. There are so many members who regularly devote their time and energy to holding fundraisers for the TMA – to raise money and to raise awareness about TM. I thank all of you. The parent group is totally amazing! And I want to offer them special thanks. How they find the time and the energy to get involved with fundraising in addition to the challenges they face in meeting the needs of their children is just remarkable to me.

Cathy and Dan Dorocak, Jack and Joanne Callahan, Jeanne and Tom Hamilton, Darian and Amy Vietzke, Pam and Morgan Hoge

When an infant or young child gets TM, these are the parents who I depend on to provide support to the families who are facing the most difficult experience they will ever encounter in their lives. They do this work with such sensitivity, empathy, and care. Thank you so much for being there for me and for being there for other parents and children who so desperately need you.

I want to thank my beautiful wife, Pauline. Pauline is involved in all of the work that I do. When the phone rings, more often than not, Pauline is the person who answers the phone. She gives so much of herself. And she gives all of you me. Thank you, Pauline. I love you!

And I want to remember Joyce Booth. Joyce died this year. Joyce was a dedicated advocate for the TM community and was the support group leader in Mississippi. When we lost Joyce, we also lost our Mississippi TM support group. Joyce has again reminded me just how fragile life is and just how much the TMA depends on the generosity of people to do our work.

So in remembering Joyce and in reflecting on the remarkable accomplishments of the TMA, I do say, “L’chaim – to life.” Life is good. There is much to celebrate. What a journey!

We have so much work to do.The journey sometimes seems so daunting.But I never forget - ever - who I am on this journey with.I am so blessed to have all of you in my life.We are all so blessed to have each other.