The Pituitary Conference was held April 13 and 14, 2001 at the UVa in Charlottesville, Virginia. For the life of me, I can't imagine why anyone would set up a conference for Friday the 13th - and Easter/Passover weekend. But several of us patients managed to get there, anyway.

I've always been a shy person, but I put my fears aside and signed up to go. As the conference got closer and closer, I started having panic attacks. It worked out well, though. My son (Michael) was coming home from college that weekend and was able to fly home on Wednesday night. I convinced my husband, Tom, and Michael that it would be a wonderful opportunity to see this new town. With them going along, I felt a little better about going.

When Thursday arrived, though, all my fears about meeting people came back and I tried to get out of going again. Tom wouldn't hear of it, though, so we left in the early evening. When we arrived, I called Sue's room and got her voice mail (thank goodness! I still wasn't ready to meet people yet). We went out on the lovely adjacent pedestrian walkway to try to get some dinner. Most places, except for bars, were closed, so I ended up having only ice cream for dinner.

We went back to the hotel. From the walkway, I could see several people in the restaurant laughing and having a good time. We thought that we might get something to eat there. As we entered, there was a small group of people near the door. Then, all at once, I recognized Sue and Deb and everyone started introducing themselves (not as hard as I'd imagined!). So, right away I met, Sue, Deb, Cris, Cookie and Stan. We all went into the bar and met those people I had seen from the street. They were mostly members of PDES and already knew each other from past conferences. We all introduced ourselves around and Tom got something to eat. Eventually, Teresa Sullivan, founder of PDES, arrived after having several flights delayed.

It was a great start.

Next morning, the convention people had set out a nice continental breakfast for us. We all registered and took our seats for several short lectures. (See information about the faculty below)

• The first, by Mary Lee Vance, MD, was titled Medical Treatment of Pituitary Tumors and Treatment of Hormone Deficiencies.
  
  
• Next, Diagnosis and Treatment of Growth Hormone Deficiency by Michael O Thorner, MB BS, Dsc, FRCP.
  
  
• Varieties of Pituitary Tumors by M. Beatriz Lopes, MD
  
  
• Molecular Biology of Pituitary Tumors by Kamal Tharpar, MD
  
  
• Pituitary Tumors and Sexual Function/Fertility by John C. Marshall, MD, PhD
  
  
• Gamma Knife Radiosurgery for Pituitary Lesions by Mary Lee Vance, MD and Dheerendra Prasad, MD.
  
  
• Then we broke for a wonderful lunch. After lunch, we had several focus groups to choose from.
  
  
• Focus Group Session 1 consisted of:
  • Acromegaly with Dr. Thorner (I chose this one)
    
    
  • Prolactinoma with Dr. Vance
    
    
  • Non-functioning Adenomas and Craniopharyngiomas with Edward R. Laws, MD, FACS
  
  
  
• Focus Group Session 2 consisted of:
  • Psychological Aspects of Pituitary Disease with Valerie Golden, PhD
    
    
  • Cushing's Disease with Dr. Vance (I chose this one. Tom and Michael went, too)
    
    
  • Controversies in Replacement Therapy with Dr Marshall and Dr Thorner

After all this information seeping into our brains, we got a break until dinnertime. I wish I had brought dressier clothes. They provided a reception for us with an open bar and a string quartet. When the reception was over, we had a fancy dinner (candles, waiters in tuxes!). We had entertainment here, too. A group of first-year medical students singing acapella. They called themselves the Spinal Chords but they couldn't keep up with the loud music coming from a wedding reception next door. After dinner, some of us kept partying and went back to the bar to talk some more.

Saturday morning, we had another continental breakfast. then, we broke up into groups - the doctors in one and the patients into another. We met with Dr Golden and discussed many topics of interest to patients and how to get better support for ourselves. Many of us "Internet People" spoke (not me, of course!). It was suggested that the doctors should have been with us, to hear our concerns and fears. I believe that next time around, they will be.

Finally, the doctors came back in to answer questions that we had submitted earlier. It was suggested here that the medical students at UVa, instead of attending classes, should have attended this conference, to see what pit people looked like and how we felt. Dr Vance thought that this was a good idea and they'll probably do this next time around. We talked more about support and how we really needed people to talk to who had "been there" now just couselors who didn't really understand. At this time, our internet support groups came up and Tom spoke to the doctors about what we're trying to do with our online support groups. He went up and talked to just the doctors, too, to hammer in the need for more support online, since we are all so spread apart. We all got a thick book of notes from the various speakers. I'll try to post as much of this as I can online.

Finally, the meeting was breaking up and we took several pictures. View them on the site now at http://www.cushings-interactive.com/photos/gallery/MaryOUVA2001.

Tom started talking to people who were still there, including Louise Pace and Mary Brim from the Cushing's Support and Research Foundation. We all thought that it would be great to have another Cushing's Conference in the fall - when flights and hotel rooms are cheaper - perhaps at the NIH, near Washington, DC. I'll keep you posted on what happens with these plans.

I think that we all had a wonderful time meeting other Cushies and learned so much. The time went by so quickly, it was amazing. There was so much to absorb in such a short time. I now know that whenever there's another event like this, I'll be on my way!

The faculty consisted of:
Valerie Golden, PhD
Department of Psychology
Columbia University

Edward R Laws, MD
W. Gayle Crutchfield Professor of Neurosurgery
Professor of Medicine
Department of Neurosurgery
University of Virginia

M. Beatrice S. Lopes, MD
Department of Pathology
Division of Neuropathology
University of Virginia

John C. Marshall, MD, PhD
Professor of Medicine
Department of Medicine
University of Virginia

Dheerendra Prasad, MD
Assistant Professor of Neurosurgery and Radiation Oncology
Department of Neurosurgery
University of Virginia

Kamal Thapar, MD
Assistant Professor of Neurosurgery
The Toronto Hospital Western Division
Toronto, ON M5T 2S8
CANADA

Michael O. Thorner, MB, BS, DSc, FRCP
Henry B. Mulholland Professor of Medicine
Chair, Department of Medicine
University of Virginia

Mary Lee Vance, MD
Professor of Medicine
Professor of Neurosurgery
Department of Medicine
University of Virginia