George Brown
08-16-2005, 10:33 AM
Hi, my name is George Brown. I am a long standing member of the Cystinuria Support Newtork. I was correctly diagnosed in 1962 with cystinuria. I participated in the testing of D-Pennicillamine at the National Institutes of Health, Bethesda, MD until it became available to the general public. In 1980, the NIH asked me to come in for an evaluation for the reactions to d-penn. Although they found nothing significant (life threatening) I was taken off the medication. I was immediately placed into the testing for Thiola, that was just beginning. I opted to go to Pelham, NY for the protocol. That testing lasted about 4-5 years before Thiola was approved for the general public. It has been 43 years since I first became aware of having cystinuria. I organized the First Cystinuria Symposium that was held July 16, 2005 at St. Vincent's Medical Center in New York City. The Symposium was very successful as about 80 people attended it from as far away as Canberra, Australia and Leeds, England. Many people came from states such as CA, CO, TX, FL, MD, ME, OK, IL to name a few. Doctors that made presentions were from New York City (2), Chicago, IL; Modesto, CA and Montreal Canada. After the Symposium Matt Lewis, your founder, and I decided to form the International Cystinuria Foundation. The four doctors have agreed to form the core of our Medical/Scientific Board and we have set up a Board of Directors to run the foundation.