VHL in Brazil!

Our first ever VHL meeting in Brazil, in Portuguese language, occurred April 25 in Saõ Paulo, chaired by Dr. José Claudio da Rocha of the Ludwig Institute. Because I was in Saõ Paulo to speak at a high-tech Security conference for Gartner, I was privileged to attend the meeting.

I arrived in Brazil Sunday at 5 am. Boston to Miami was 3.5 hours, and Miami to Saõ Paulo was another 8 hours. I spent Sunday afternoon touring with Dr. Rocha. From Sunday evening through Tuesday evening I had a very full schedule of meetings for the Security Conference, which was very successful. I met with interesting Brazilian clients, and learned a lot about local issues and local laws.

Saõ Paulo is the financial center of Latin America. It is also one of the five largest cities in the world, with 18.5 million people. Mexico City is even larger, with 20 million. To give you a point of reference 20 million is the population of the entire continent of Australia. The shoes from Brazil are among the most fashionable in the world, and the clothes are vibrant and sexy.

Saõ Paulo is also the medical research center of Latin America. The Hospital do Cancer here is a partner in the genome project, and has all the most modern equipment. The Ludwig Institute conducts a great deal of research. Dr. Rocha has created an excellent clinical care center for VHL.

Thursday was VHL day! We met in a conference room at the Hospital do Cancer with thirty-one patients and family members. Dr. Rocha and his colleagues made presentations in Portuguese about VHL, about DNA testing, and about clinical care for CNS and kidney lesions. Then I spoke, sharing with them our experiences in forming the VHL Family Alliance, and the benefits we have gained from being together these past nine years. We have learned so much from each other, and found comfort in knowing we don’t have to go through this alone.

Most of all, we welcome the participation of groups from other parts of the world. It makes the world smaller, and increases the size of the community of families. It also gives us a broader perspective on the disease. In only three years of his project, Dr. Rocha has identified 21 distinct families with VHL. In fact eight of these families have mutations we have not seen before among families in North America, Europe, the Middle East, nor Japan. I used slides in Portuguese, and Dr. Maria Isabel Achatz was kind enough to translate my remarks into Portuguese.

We shared our stories, we laughed, cried, and hugged, and took lots of photos. Dr. Rocha’s clinical screening program has already made a positive impact in the course of the disease in these Brazilian families. Now that they have found each other, I am sure that the families will work to form a family support organization in Brazil. We look forward to working with our neighbors in South America!