My stem cell journey began in Rome, at a Vatican adult stem cell conference close to a year ago. I chaired the opening panel, which was on stem cell therapy and multiple sclerosis. Joining the group was Dr. Saud Sadiq, a New York MS specialist, who I had known casually for a decade. I privately expressed interest in cell therapy to him. "Come see me when we get back to New York," he said after the closing dinner.
In mid-August 2013, the Food and Drug Administration approved a phase one stem cell clinical trial for MS. I began tests and procedures and endless blood work, preparing for the possibility of being included in the study. In September, I underwent a bone marrow aspiration. Marrow containing millions of stem cells was pulled from my chest. An MRI and spinal tap sealed the deal. I was in.
Only 20 patients had been tapped for this spectacular opportunity. My stem cell infusion took place in New York City on a recent frigid winter day, inaugurating the study. The event was a long time coming. I was more enthusiastic than apprehensive. I knew a long, thin needle would be inserted into my spinal column and the cells released. I was ready.
It was an emotional moment. I had been told for more than 40 years that I had an incurable illness, and there was no treatment or hope. I did not know what to think. Hope comes slowly to one who has not known any. Expectations are dangerous. I would not allow myself fantasies of recovered function. Protecting myself moved from a focus on disease to a fear of disappointment.