Big-D Welcomes Rare Neuro-Immunologic Disorders Symposium

Like a family reunion, those of us who have suffered the effects of Transverse Myelitis along with our supporters and physicians involved in treatment and research, gathered at the University of Texas Southwestern Medical Center for this year‘s symposium. I’m sure most of the attendees, like me, looked forward to meeting and visiting with others involved in this battle, as well as hearing from the medical community about the latest in Research and Development. Our ‘family’ includes not only us victims of TM, NMO, ADEM but also many others who support our cause and us. It was good to see some old faces, but just as importantly meet and greet new attendees. 

Most important, I know all of us want to say THANK YOU, THANK YOU, THANK YOU to all the folks that made this Symposium possible. Dr. Greenberg and his associates were very generous with their time and knowledge. Also, the folks that spent many hours arranging all the details deserve a special THANK YOU. I think all of us are envious of Dr. Greenberg’s ability to mix humor with serious subjects. We smiled and even laughed a lot. Bringing medical terminology down to where we can understand it was key to the success of the meeting. There were times when I was amazed at seeing some long medical term on the screen and the presenter pronounce it just as easy as I could say y’all. And, there were a few times when things were over my head, but I felt most of the presentations were very understandable. We had about 17 physicians making presentations and contributing their time and expertise for our benefit. WOW!! THANKS!! This year the attendees included individuals diagnosed with TM, ADEM, NMO, their family members and supporters. It was uncomplicated for all of us to understand the parts of the talks that show great promise for breakthroughs and new developments, especially in Stem Cell Research and the benefits that could be applied to Transverse Myelitis.

This is my fourth Symposium and I feel our association is absolutely moving in the right direction. You can’t think of the Transverse Myelitis Association without thinking of Sandy Siegel, President and Founder of SRNA. Sandy was there with his beautiful and smiling wife Pauline, who suffers from TM. If not for Sandy and Pauline, our organization would not exist. We can’t say enough THANK YOU’s to them. As always, Chitra Krishnan, the Executive Director of our association was there making sure things were progressing, as they should. We are very fortunate to have Chitra as our leader. Her extensive educational background, as well as being involved with SRNA when she was at Johns Hopkins, makes her the ideal person to lead our association. Let’s keep her happy.

On Friday night, guess who showed up, Dr. Douglas Kerr! It was special to see him and have him participate in the Friday afternoon Q & A Session. If SRNA has a mentor it has to be Dr. Kerr. His leadership and research at Johns Hopkins as well as his support of Sandy Siegel in the early days of SRNA was invaluable in making SRNA what it is today. When I first saw him and as I passed him, I said, “Well, Dr. Kerr is here!” His response was, “Yes, let the party begin”. Typical Doug Kerr.

We were fortunate to have Jason Robbins in attendance. Everyone that knows Jason, an Attorney from Cocoa, Florida, knows what a POWER HOUSE he is in getting things done along with and maybe even surpassed by his wife Tina. Early this year, I had the opportunity to attend a SRNA fundraiser “Walk for Transverse Myelitis in honor of Sarah Robbins.” Jason and his wife, Tina arranged the fundraiser in honor of their daughter Sarah. It was an unbelievable event! When I arrived, I couldn’t believe the number of people attending and all the preparation that had taken place. I thought I was in the wrong place until I saw a sign that said “Transverse Myelitis Association.” Their daughter Sarah is a beautiful 12-year-old young lady who is a TM Victim. Also, Sarah is ’non verbal’ and has been wheelchair bound. However, she has made great progress in being able to now walk short distances and hopefully more in the future. Jason was at the meeting and I am glad to hear that he has joined our SRNA Board. A great addition! Thanks Jason, for accepting. I was fortunate to be able to sit next to Tom and Sherri Kerney from Orlando during most of the meeting. I met Tom & Sherri at the “Walk” in Cocoa. Tom is a TM Victim, a CPA and Tax Attorney. Sherri, his wife, is a recently retired attorney. I appreciated their friendship and allowing me join them during the symposium. Tom and I had both signed up to participate in the longitudinal natural history study, so we had met earlier with Dina O’Brien, a beautiful young lady and former Scholarship Golfer from Baylor University. Dina is one of the clinical research coordinators at UTSW. We did our paper work and gave our blood. We now have our blood in the vault and are part of TM Clinical Research. Also, visiting with Rita Bevan from Salt Lake City, a former attendee, and catching up on events in our lives was a treat. There were two attendees from London and Australia as well!

Friday night we were treated to a Key Note Address by Anjali Forber-Pratt, a Paralympic Medalist and Faculty Member at the University of Kansas. After listening to Anjali describe how she goes through wheelchair training for Paralympic events, we were all probably ashamed of how little we exercise. We’ll try and do more. Very inspiring message! After Anjali, Sandy, as usual, gave a very emotional and moving account of the dedication and untiring work done by this year’s SRNA Distinguished Service Award winner Debbie Capen. Anyone listening could tell the passion that Sandy has for our organization and his appreciation of the work done by Debbie. I have been with SRNA for twenty (20) years and all that time Debbie has been our secretary doing untold hours of volunteer work for the association. Debbie, Congratulations, there is no one that deserves the award more.

The Embassy Suites was well located in relation to the T. Boone Pickens Building where we met. The negotiated price was right and the facilities at UTSW were excellent!

I eagerly look forward to the next ‘Family Reunion’ and symposium and hope the message gets to more of our colleagues that attendance will be very beneficial.

~ Ron Raulerson, Florida