Transverse Myelitis Association
Volume 8 Issue 2

Article 1

The James Timothy Lubin Fellowship in Rare Neuroimmunologic Disorders

I first met Jim Lubin shortly after Pauline was diagnosed with Transverse Myelitis.  I typed “transverse myelitis” into the Yahoo search engine and the link for Jim’s disABILITY resources web site appeared on my screen.  I followed the links to Jim’s home page where Pauline and I learned about Jim’s experience with Transverse Myelitis.  I immediately began communicating with Jim.  Pauline and I were so excited to meet another person with TM and we were thrilled to initiate a relationship with Jim.  I have no idea when that day was; I don’t even remember the year.  But I have no doubt that if I asked Jim to send me those first email messages between us; he would have them sent to me within about ten minutes.  In the grand order of things, it is so appropriate that our first meeting was on the internet.  What Jim does with computers and technology is more than amazing. 

At the time I met Jim, Paula and I were already working with Deanne to develop the TMA.  We had absolutely no internet presence.  Deanne, Paula and I were using email, but we didn’t have the slightest idea how to construct a web site.  Web sites and the internet were still in their infancy.  After seeing Jim’s disABILITY resources and his home page, I approached Jim about setting up a web site for the TMA.  Jim and I were both AOL subscribers.  AOL had just begun to offer members server space to create web pages.  Jim established the first TMA web site on the AOL server.  Jim immersed himself in developing the content and format for our web site.  Through Jim’s creativity, energy, and tremendous skill, our web site has evolved into an incredible resource for our community and for medical professionals with an interest in the neuroimmunologic disorders. 

After working with Jim on our web site and on numerous administrative matters for the Association, Jim became an officer and board member of the TMA.  It would be impossible for me to chronicle all of the amazing contributions Jim has made to the TMA through his mastery of information technology, but I would like to share with you some examples of Jim’s work.  It is important to bear in mind that almost none of these efforts resulted from a request made of Jim by the other officers.  Almost all of these incredibly brilliant and creative projects have developed from Jim’s own interests and initiative and from his passion to help others.

Jim is responsible for collecting, organizing and presenting all of the content on our web site.  We have gathered a tremendous amount of information over the years about the neuroimmunologic disorders.  In addition to the medical information, if you are seeking information about social service programs or assistive technology or a myriad of other subjects, Jim has the information and links to an enormous number and variety of resources on our web site.  Jim is constantly tinkering with the organization of the site to make it easier for people to use and find information.

No one has done more than Jim to create a real sense of community among the TMA.  Jim has established numerous ways for people to interact and to share information with each other.  Jim has constructed all of the support group pages, he has set up and runs many different message boards and he created and maintains the transverse myelitis internet club, one of the longest running list-serves on the internet.   

Jim automated our membership enrollment process on the internet.   Through this automated process, Jim has been responsible for growing our membership from just under 200 members in 1997 to the more than 7,000 members we have today from more than 80 countries around the world.  And Jim has played a primary role in the development of our international support groups. 

One of the more interesting and critically important of Jim’s initiatives has involved the translations of significant areas of our web site, as well as critical medical articles, into numerous languages.  This effort has quite literally made the information on our site accessible to the largest number of people.  Jim uses a volunteer web site to post requests for language translators.  Each of the flags that you find on our web site denotes that a particular web page or article has been translated into that country’s language.  And with almost all of his work, Jim finds a way to accomplish these efforts without any cost.  The translators do all of this work as volunteers.  We have met the most wonderful people through Jim’s translation program.  Jim and I began regular communications with our Italian translator and developed a personal relationship with Federica Boiani.  Freddie lives in Rome.  She was so moved by the TMA’s work and our cause that she offered to initiate a support group in Italy.  Not only does Freddie facilitate communications between our members in Italy, she also translates all of our new member packet materials into Italian and mails these materials to our new members.  She is a remarkable human being that we found through Jim’s efforts. 

We wanted to find a way to create awareness of the neuroimmunologic disorders by placing our organization name and logo on items that we could sell.  As the TMA does not have the resources to purchase items, and warehouse and ship them, we had to find a more creative way to accomplish this goal.  Jim found and set up the TMA logo store on Café Press.   Our members can purchase numerous items with the TMA logo, and for the international and state support groups who have designed their own logos, Jim has created stores for these items as well. 

Jim has worked so hard to find easy and creative ways to raise funds for the Association.  We recognize that many of our members struggle with financial issues; that is one of the reasons the TMA does not have membership dues.  But Jim has found ways for everyone to participate in our fundraising efforts, regardless of their personal resources.  From our inkjet recycling program to the cell phone recycling program, to the igive shopping mall, Jim has found so many different ways to fund the TMA’s programs.

Jim is the TMA’s IT Director and all of our IT staff!  Jim is directly involved in the production process for the creation and dissemination of all of the TMA’s publications.  Jim has established and manages our numerous internet accounts and our email accounts.  And Jim is constantly troubleshooting the many different and complicated computer issues that his technologically-challenged fellow officers create for him on a daily basis.  Jim is our expert on all things technology.  We don’t purchase it or use it without first consulting Jim and obtaining his advice and guidance.  And as with every request made of Jim, you ask for help at 11:00 AM, and you get your response at 11:15 AM.  Jim is just totally amazing in all ways.

Through his work, Jim has helped to make a very grassroots organization with very limited resources look and behave like a very large, professional and well established association.  If you learn about the TMA from our web site, one would not likely conclude that the international headquarters of the TMA is the Siegel family kitchen.

Jim does this work almost all day long and seven days a week.  Jim is central to the TMA.  Paula, Debbie and I consider Jim the heart and soul of the TMA. 

Jim was so severely impacted by TM.  Jim was just 21 years old when he had his attack.  At the time, Jim was working for a company that manufactured high tech medical equipment that is used for cardiac catheterizations.  Jim was at work when his attack began.  In many ways, it is a miracle that Jim survived.  His attack was not only quite severe, it occurred at the very top of his cord.  Jim is full quadriplegic and ventilator dependent.  In the more than 20 years since Jim’s attack, he has not recovered any motor function.  It was during his very long rehabilitation that Jim met an occupational therapist who introduced him to the sip and puff technology approach for using a computer.  Jim learned the approach quickly and has become incredibly proficient at using it.  Jim does all of this computer work by sipping and puffing Morse code into an adaptive device.  Jim can type about 17 words a minute.  You don’t get dissertations communicating with Jim, but you wouldn’t get a dissertation from Jim if he typed 80 words a minute. 

Jim came home from the hospital and his rehabilitation to an incredibly loving and supportive family.  Jim’s mom is Jim’s primary caregiver.  Jim receives the most outstanding care from Helena.  She is one of the most remarkable people I have met in my life.  Jim’s brother, Joe, has been there for Jim in all ways through this entire experience.  Jim is so blessed to have Helena and Joe.  Jim’s family is one of the primary reasons that for the past twenty years, while he cannot move a muscle below his neck or breathe on his own, he has incredibly good health.    

Jim is not angry or bitter about his experiences.  In fact, Jim is one of the most positive and hopeful people that I know.  Jim loves so much about his life.  Jim loves food.  Jim loves to listen to music – all kinds of music.  Jim loves movies.  Jim has an interest in so many different things in the world around him, from world events to our space program and astronomy to his world of technology.  Jim very rarely leaves his house and yet he communicates with far more people than I do.  And Jim is communicating with people from across the globe.  Jim has good friends from all over the world that he talks to on a daily basis.  There is very little that is small or confined about the world Jim lives in. 

It is impossible to know Jim and to understand what Jim has lived through for the past twenty years without reflecting on your own life, which I do often.  What would I do if this happened to me?  Would I be able to find a way to be so positive and hopeful?  Would I find a way to continue to love life?  Would I be able to find a way to have a meaningful life?  Of course, I have absolutely no idea.  I have learned over the years that we don’t know what we would really do in a particular situation until it actually happens to us.  While I don’t know what I would do, I sure hope that I would be able to find a way to emulate Jim. 

Over the years, Pauline and I have become very close with Jim, Helena and Joe.  We love them as members of our own family.  I know that Paula and Debbie feel the same way.  I have also come to know Jim very well.  I have no doubt in my mind that Jim could have had a very entertaining and enjoyable life spent surrounded by his technology and doing all sorts of really geeky things all day long.  There is no shortage of highly stimulating programming and software applications.  There are millions of people who do spend a huge amount of their lives gaming; and now this gaming can be done over the internet.  It would be very easy and very entertaining for Jim to be immersed in this entertainment.  But that is not the direction Jim has taken in his journey.  Jim’s life is filled with helping people; all day long and in so many different ways.  Jim not only fills his life working for the TMA; he also runs a support group for quadriplegics and a vent-dependent support network.  And Jim is always building new web sites for other organizations.  Jim’s numerous accomplishments were recognized in 1999 when he was awarded the New Mobility Magazine’s Person of the Year.  Jim’s contributions are internationally recognized. 

Paula, Debbie and I regularly seek ways to recognize Jim’s efforts and his impact on all of our lives.  For instance, in our bylaws, the elections for the officers and board are scheduled on Jim’s birthday.  Blue is Jim’s favorite color; it is no accident that our logo, our web site and our wristbands are blue.  And we refer to this shade of blue as “Lubin blue”. 

Jim has devoted the past twenty years of his life to helping others.  To honor Jim’s devotion to our community and to recognize his incredible contributions to people with the neuroimmunologic disorders and their families, The Transverse Myelitis Association is establishing the James Timothy Lubin Fellowship in Rare Neuroimmunologic Disorders.  There is no greater need in our community than the provision of medical care by neurologists who have experience and expertise in these rare disorders.  There is also a critical need to foster the development of scientists who are interested in these disorders.  What better way to recognize and honor Jim than to establish a fellowship that will ultimately provide the best clinical care to the people Jim has devoted his life to helping and find the causes and cures for TM, NMO, ON and ADEM. 

The purpose of the James Timothy Lubin Fellowship in Rare Neuroimmunologic Disorders is to encourage the development of medical specializations in TM, ADEM and NMO through a year of study under a leading TM, ADEM or NMO specialist.  The fellowship is focused on the provision of exceptional clinical care and/or research into these rare neuroimmunologic disorders.  Award of the Fellowship will be based on the expectation that the recipient will continue to specialize in ADEM, NMO and/or TM.  If the fellowship includes a clinical and basic science research project, the fellowship term may be up to two full academic years.  

The fellow will be required to work with a mentor (a TM, NMO and/or ADEM specialist).  The mentor must be a faculty member with demonstrated clinical specialization and practice in at least one of the disorders.  Preference will be given to medical centers of excellence in the disorders.  If the fellowship includes a research program, the mentor must also be a scientist with research experience and publications in these rare disorders.  

In order to award one fellowship each year, the TMA will need to raise $100,000.  The number of fellowships we can offer will only be limited by the resources we are able to devote to this important program.  Most of the people that I speak with for the first time are seeking a TM specialist or a NMO specialist or an ADEM specialist.  If you have one of these disorders or if you are a family member or friend of a person with one of these disorders, an investment in this fellowship program will bring you very direct and profound benefits.   

We are going to need your help to raise this money, and this help is going to need to be offered on a continuing basis in order to make this fellowship program a reality.  The TMA is committed to an aggressive fundraising effort to create and maintain this fellowship program.  More than any other program we have initiated, the James Timothy Lubin Fellowship in Rare Neuroimmunologic Disorders represents the most significant investment in all of our futures.  

I am thrilled to announce that Sharon Robinson will be directing our efforts to create, develop and manage the James Timothy Lubin Fellowship Program.  Sharon owns and operates an architectural firm in the Seattle area.  Sharon is also our support network leader for people who have one of the rheumatic disorders as an underlying condition of one of the neuroimmunologic disorders.  Sharon has Lupus and TM.  We are grateful for Sharon’s willingness to volunteer her time, energy and expertise to this critically important program.    

We urge you to get involved in this fundraising effort.  I know that over the years many people have been inspired by Jim.  Please join us in honoring Jim by helping to get this important program started.  I can think of no greater legacy for Jim than to have highly motivated, brilliant and skilled physicians enter the discipline of neuroimmunology to provide clinical care to the people Jim has cared for so deeply for the past twenty years.  Please make a donation to the TMA for the purpose of funding the James Timothy Lubin Fellowship and then please make your contributions a regular part of your generous giving.  If you have been considering starting a fundraising program with your friends and family, this fellowship would be an excellent focus of your efforts.  What more pressing or critical issue do you have in your own life or in your child’s life than to assure that you or they have the best medical care available and that there are researchers who are interesting in understanding TM, NMO, ADEM and ON. 

Dr. Douglas Kerr announced the first specialization in TM in 1999.  In 2006, Dr. Benjamin Greenberg joined the Johns Hopkins TM Center and became the second specialist in TM.  That’s two.  Dr. Kerr and Dr. Greenberg are the most wonderful physicians and scientists but they would also be the first to acknowledge that there is a critical need to grow the discipline.  It is going to be our responsibility to make this happen.  We have 7,000 members from around the world.  It is going to be incumbent on each of us to participate in this program in some way. 

If you would like additional information about the fellowship, please contact Sharon Robinson.
srobinson@myelitis.org
(360)671-8415

The James Timothy Lubin Fellowship emanates from our admiration and respect for Jim and our gratitude for all he has accomplished for all of us.   Thank you for inspiring the best from each of us, Jim.  We love you.

Jim and Sandy at the 2008 Symposium

 

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