Transverse Myelitis Association
Volume 5 Issue 1
Volume 5 Issue 1
|Cody Unser First Step
Foundation California TM
Conference June, 2002
It’s over! What a great experience! What am I talking about? The two day conference on Transverse Myelitis that was held June 19-20, 2002 at the Sutton Place Hotel in Newport Beach, California. A conference made possible by a grant that the Cody Unser First Step Foundation received from the California Endowment fund for California residents. It was co-sponsored by the Cody Unser First Step Foundation and the Reeve-Irvine Research Center at the University of California, Irvine. What an exciting time everyone had. We made new friends, learned a lot of new information from the speakers and from each other. We bonded, we cried, we got excited at some new ideas, some of us came away with a determination to start the ground work to build a network of support groups in the state.
One of the attendees had been diagnosed with TM in 1964. Until this conference, he had never met another person with TM. We received first-hand information about the latest spinal cord research from the members of the research team at Reeve-Irvine Center. We met and heard from Dr. Kerr, Dr. Kaplin and Chitra Krishnan, MHS, all from the John Hopkins TM Center. We met Cody Unser, the founder of the Cody Unser First Step Foundation, who has a contagious upbeat attitude with so much energy directed towards raising research funding and awareness of TM.
Those of us who had never had the opportunity to meet Sandy and Pauline Siegel finally did so and wished we had been able to do so earlier. Looking back at those two days I am in awe of the people I met and their commitment to research, awareness and the support of each other with TM.
Over 100 folks attended the free event. There was a great mix of people in attendance. There were those of us with Transverse Myelitis, caregivers, physical therapists, clinicians, and doctors. It was great to see people that I have met through the years as well as to make new friends and to put faces with names of others with whom I have corresponded over the years. People were bubbling with excitement and anticipation of the programs ahead for the next two days and the opportunities to make new friends.
The first morning we heard from members of the Reeve-Irvine Research Center who each spoke about topics related to mechanisms of neural injury in the spinal cord. Oswald Steward, Ph.D, Director, Reeve-Irvine Research Center talked to us about the body’s response to CNS injury. He described how our understanding of how the body reacts after an injury and what can be done to repair the damage is growing at a fantastic pace and the body’s response to CNS injury. Hans Keirstead, Ph.D. spoke about potential treatments and clinical trials. The Reeve-Irvine Research Center currently has several potential treatments in the preclinical phase, on the verge of moving to phase I clinical trial. Aileen Anderson, Ph.D. spoke about inflammation. She described how the processes of degeneration and regeneration are intertwined in both their impact on, and potential benefits to, the goal of improved functional outcome in the injured spinal cord.
Another member of the Reeve-Irvine Research Center team is Maura Hofstadter, Ph.D., Director of Education and Scientific Liaison. She was a critical component of putting the event together and was an instant friend to many of us.
The morning session was followed by lunch. There was so much ebullience in the room as everyone was trying to meet as many other people as they could and to discuss the roads everyone has traveled with TM. Food was great too!
The afternoon session started with Dr. Doug Kerr. Dr. Kerr discussed the clinical features and prognostic factors of Acute Transverse Myelitis. Chitra Krishnan, MHS, spoke about Acute Transverse Myelitis being a group of disorders characterized by focal inflammation of the spinal cord and resultant neural injury. After our break we heard about symptom management in Acute TM. Leslie Morrison, M.D. from the University of New Mexico talked about Acute TM special issues, specifically pediatric Acute TM. Adam Kaplin, M.D., Ph.D. talked about the psychological impact of TM on a person. He addressed how the impact on individuals can be profound as they adjust to TM. The results can be prolonged sadness and demoralization. Other events can result in depression.
We had a group dinner. Great fun, friends and talk. Many of us talked with Cody Unser during the evening and are so impressed with her commitment to TM. She also is a regular teen-ager. We so appreciate her involvement with TM.
The next morning, after a continental breakfast, we heard Dr. Morrison discuss symptom management in Acute TM, including spasticity and gait. Dr. Kaplin spoke about urologic/sexual function and Dr. Kerr talked about Neurorestorative therapies. Sandy Siegel, Ph.D. and President of The Transverse Myelitis Association talked about quality of life assessments and caregiver issues. There was also a lot of great discussion on personal issues of the folks attending the conference. We learned a great deal from each other.
After lunch, another great meal, we had TM networking and breakout sessions. I participated in a group that had so much energy towards support group activity. We brain-stormed some of the things we would be interested in seeing done in a support group. At the end of the day it was difficult to leave. Debbie Capen and I have agreed to co-coordinate initiating support groups in California. If you are interested, you can contact me using my email address at cindymcleroy[AT SIGN]sbcglobal.net or calling me at (714)638-5493.
I sincerely hope that this conference was just the “FIRST” annual TM conference for California.
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