December 11, 2001

Dear Member of the PLS community, 

    Our Neuromuscular Disorders Program is continuing a study involving sporadic (or non-inherited) diseases of the motor neurons, such as PLS and ALS, that we thought might be of interest to you.  As you know, the cause(s) of these disorders are not known.  We are interested in determining whether genetic factors may “predispose” an individual to developing sporadic cases of ALS and PLS.  We suspect that sporadic cases of these disorders may be the result of not one, but several genetic factors coming together.  Recent advances in the field of statistical genetics make it possible to answer such questions if there are sufficient study participants available. 

    Blood samples from patients and their living parents and brothers and sisters are needed for this study.  We need 400 sets of samples from a patient and both of that patient’s parents for each disease.  Additionally, we need 400 sets of samples from a patient and that patient’s brother or sister, who is preferably at least as old as the patient was when he or she first noted symptoms of the disease.    

    We need 2 tablespoons of blood from each participant.  We will supply the needed tubes and instructions for returning the samples via Federal Express without charge to the participants.  Most physicians and labs will draw the samples without charge, but we will pay for drawing of samples if applicable. 

    Obviously there will not be an immediate benefit to patients, but an understanding of the causes of disease of the motor neuron may eventually benefit patients with these diseases. 

    Anyone willing to participate in this study, or wishing to discuss it, please contact us.  We look forward to working with you on this endeavor.