I started emailing one person with TM. He thought it would be neat to have a “Transverse Myelitis Internet Club” so we could communicate with others. When my internet service made email list group an option, I started one for quadriplegics and one for vent-users. I started the tmic-list a few months later and sent a message to the ten or so people I had come across who had mentioned or asked about transverse myelitis. That’s how the list started.
In 1997, I offered to make a web site for The Siegel Rare Neuroimmune Association. We still didn’t have much information at that time, but it helped people around the world find us. In 1998, New Mobility magazine named me their “Person of the Year”. That was mostly because of the emails they received from all the people on the tmic-list.
In 2008, The Siegel Rare Neuroimmune Association honored me by starting the James T. Lubin Clinician-Scientist Fellowship award to support the post-residency training of clinicians and scientists committed to careers in academic medicine specializing in rare neuroimmune disorders of the Central Nervous System.
Being dependent on a ventilator to breathe for me, I consider every day a blessing to still be alive all these years. I am so grateful I have been able to watch my niece grow-up. My hope is to remain healthy and have a positive effect on the world around me.