The James T Lubin Fellowship Program

No one hears about ADEM, NMO, ON or TM until they or a loved one is given a diagnosis.  The incidence of TM is about 1 in a million.  There are only about 1400 new cases of TM every year in the United States.  The geographic distribution almost appears random.  What this means is that big city hospitals see a few cases of these disorders every year and many small community hospitals see none at all.  These disorders are often misdiagnosed or the diagnosis takes a long period of time often because of a lack of medical training and experience.  Most unfortunately, the best chances a person has for any recovery depends on a rapid diagnosis and the initiation of acute treatments to quiet down the immune system.  The longer the immune system has to attack, the greater the likelihood that permanent and irreparable damage will be done.  

These disorders can leave a person paralyzed or blind or unable to breathe on their own.  The cells that make up the nervous system do not heal themselves the way other cells, such as bone or muscle, are able to do.  The healing process is far less efficient or effective.  As a result, if permanent damage is caused by the immune attack, the symptoms from these disorders can become permanent as well.  Medical science does not know how to repair the brain, the optic nerve or the spinal cord. 

Children as young as 4 to 6 months old can get these disorders.  Many children are paralyzed before they've even had a chance in life to take their first step.  People can be diagnosed with one of these disorders into their 70s and 80s and every age in between.  Both males and females can get these disorders and people are diagnosed from every country and continent.    

The James T Lubin Fellowship was established in honor of Jim Lubin, an officer and board member of the TMA since its inception.  Jim was diagnosed with TM when he was just 21 years old.  He experienced no recovery from the attack high in his spinal cord and has been a full quadriplegic and ventilator dependent for more than 20 years.   

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. 

• There have been no clinical trials or scientific evidence to guide acute treatments for these rare disorders. 
• There are no biomarkers for TM, ADEM and ON; the diagnoses remain a challenge and take too long when time translates into the possibility of greater damage to the spinal cord, brain or optic nerves.
• There have been no clinical trials or scientific evidence to guide long term therapies for the recurrent types of these disorders.
• There have been no clinical trials to guide the management of the difficult symptoms from these disorders.
• As there has been very little research, decisions about treatment are based on expert judgment; and there are not nearly enough experts in this discipline.  There are only two TM Centers of Excellence in the world.  There are no centers of excellence in ADEM.
• Research is desperately needed on restorative therapies to heal the spinal cord, brain and optic nerves after permanent damage has been done to the central nervous system.

By donating to the Fellowship Program, you can directly influence the growth of the number of scientists doing research on these disorders and the number of physicians caring for you and your loved ones.    

We urge you to make a tax deductible donation to fund  James T Lubin Fellowship Program.  You can send a check to The Transverse Myelitis Association, 1787 Sutter Parkway, Powell, Ohio 43065-8806.  Please be sure that you indicate on the check that your donation is to support the fellowship.  Or you can make an electronic donation by clicking on this link: www.myelitis.org/fellowship-donation

Thank you for helping us to make an important difference in your life!