2006 Conference Story

Heather Koczur

Friday, June 23, 2006

Heather KoczurMy adventures at conference 2006 started late afternoon on Thursday. After experiencing the Minneapolis rush hour, I finally made it to the Hilton where I immediately ran into one of my favorite PH buddies, Anne Caesar and her husband Bruce. We caught up while I tried to get my bearings as to where everything was in the hotel. I was turned all about for some reason. (Side note: I’m one of those people who can’t tell their friends where they are. I know where I am, why don’t you know where I am? If one of those nifty GPS thingies could be attached to my head so the “you are here” dot would appear on a map, life would be good.) I figured out where I was, where I needed to go and so I bid Anne adieu and I was off to become a volunteer.

The registration “office” and the store were crazy but in a happy-go-lucky sort of way. Everyone was excited to be there, from those checking in to those doing the checking in. I would later realize that this positive energy would almost be a sub theme to the weekend. (I was excited to see another favorite PH bud, Phil. Phil decided at the last minute to drive up from DC to attend. He worked almost the entire time in the office, becoming one of the unofficial greeters of conference.) After I registered, I was off to guard the research poster area and answer any questions that might come up. Silly me, I thought this area was going to be filled with pretty posters like those you see promoting movies. I was so wrong. They were very abstract and very technical. I could appreciate them for the information they covered but most of it went over my head. By the time the posters no longer needed security, most of the pre-conference activities were done and most people had wandered off. I should have followed their lead and tried to get some rest. Conference is an exciting experience but it is also one of the most tiring events I’ve ever participated in. So next time, going to bed early is a must!

Friday morning started out with sunshine and lots of smiles. (Little would I know that this would be the last time I would see the big ball in the sky for a week.) The excitement from Thursday spilled over into the wee hours (7:30am) as again, people checked in, collected their t-shirts and prepared for the official conference opening. I attended a support group leader gathering to learn tips and tricks on how to be a great support leader. Other leaders from all over the world shared their thoughts on how to increase group numbers to issues they were having within their groups. We quickly wrapped up that meeting because it was time for conference opening ceremonies!!!

Jack Stibbs started us out with a speech I’ll call “The State of PHA”. He covered topics such as advocacy awareness, patient support programs and the growing international community. (The “It’s A Small World” song could have played here, as there were representatives from all parts of the world. Australia, Germany and Mexico just to name a few.) Congressmen Lantos and Brady gave speeches via video after Rino presented them with Advocacy Awards. We had a quiet half hour before the first group of sessions started and I had the opportunity to meet Gail Hayes. She was the first of many amazing people that I met throughout the weekend. Gail is the author of the Survival Guide many times over. She was telling me about another article that she has written and I recommend that everyone go and look it up. On the PHA website, go to the “About Us” button and then select “history” from the options and then “long history”. Gail explains how it all got started.

My first official conference session was “Dealing with Family and Friends” presented by Joanne Sperando-Schmidt and Betty Lou Wojciechowski. Wow, this was good!!! They gave suggestions on how to answer the most frequently asked question “What can I do for you?” They also covered how to “mourn” the loss of friends that decide to move on and how to make sure you don’t overwhelm others in your life. Contrary to what we think, not all non-PH’ers out there want to know the numbers! (sigh) They don’t know what they are missing. As Joanne pointed out, it isn’t always about you, the patient. Betty Lou talked about how her family has dealt with PH, the good days and the bad. She talked about the Circle of Friends program and how it got started. I was particularly interested in this as I would like to start a campaign but wasn’t sure how to get it going. Betty Lou made it sound so easy! Even though I consider myself a pretty poor fundraiser (my high school band and college sorority would confirm this fact), Betty Lou made me start believing in myself. She ended the presentation portion of the session with reading “The Spoon Theory” and presenting everyone with a little spoon. It was very touching. These two ladies were some of my favorite people that I met during the weekend. They had so much energy and a positive vibe; you wanted to be near them. Later during the Saturday dinner, I was fortunate to be seated at Joanne’s table and wow, I felt like I was within arms reach of a celebrity. (Actually, I described seeing some of the doctors like being at a rock concert. Here were some of the top people in the PH community, the people you always hear about and want to see if you have PH, and they were within arms reach. I was star struck at times!)

After this session, I needed some fresh air. Between the excitement of conference, the lack of sleep the night before and way too much caffeine, I was heading towards a melt down of great proportions. Even Debbie knew I needed a break. So I headed outdoors for awhile, then came back for a shower and was completely refreshed and ready for Dr. McGoon’s “Many Paths: One Journey” speech at Friday night’s dinner.

This speech was amazing. Dr. McGoon started with the first conference in Georgia (I think that is right) and went through the advances both at PHA and the medical community, ending with the 2006 conference. He had some humor here and there, the occasional funny photo of a doctor or two to break up the serious and yet important advances in research. After every conference, he would show the graph of how many members PHA had. Starting with 3 and growing to at least 4,000 in about 15 years had everyone cheering. It was a wonderful history of both the disease and the organization. I’ve heard people say that this is a good time to have PH because there are so many treatment possibilities available and so many more going into trial. There are actually facts to support this statement!

After being overwhelmed and close to melting down on Friday, Saturday started on a more positive note for me. I started my day way too early in the office, doing whatever I could to help. The excitement from the previous day was still around, perhaps even bubblier as this was the full day of conference activities. This attitude helped me over the fact that I was up hours before I rise for my “regular” job and therefore, suppressing the urge to hop back into bed. It is hard to be cranky when people are so excited to see and meet other PH’ers. Anyway, my first session was “Living with a chronic illness.” I sat with a new friend, Traci, and learned a lot. I even got Traci to ask her question, taking her out of her comfort zone. (Go Traci!) She was asking how to fight the urge to protect the patient, the need to put them in bubble wrap so that they don’t get hurt. A woman stood up, another patient, and provided this answer: Just because I have a chronic illness, does not exempt me from making stupid choices. Speak up; tell me if you are concerned. I think this could be one of my favorite quotes from the weekend. The panel made suggestions of “there is a positive in every negative, look for it” and when you are down, surround yourself with what makes you happy. A woman stood up and asked how to get over feeling that you just can’t get out of bed even when you need to. Another patient replied that emotions come in waves. Eventually they break so try to ride it out. Between this session and the dealing with family session, I realized how important the support group is to the PH’er. They provide the balance that the patient needs. The patient was often recommended to move the illness to the back burner so that they don’t overwhelm others. But what about those emotions? You need to be able to resolve them as well. That is why the support group is so important. A patient can go and chat with others who are like them.

The next few hours were a blur of basic research in PH, emergency situations and PH, an interview for PHA’s oral history project and lunch. I needed some down time. Besides, I had the message board gathering coming up and the Founders Dinner to attend.

After a few weeks of keeping my fingers crossed, the first official message board gathering occurred. Everyone was so excited to place a screen name with a real name and a face. We gathered in a circle (felt very support group-ish) and introduced ourselves. Then we broke into discussions about this and that. It was as if a group of old friends had gathered after a long absence of time. It was heartwarming to see everyone’s smiling face. (And some husbands joined us because they wanted to meet the people their wives were chatting with all night!)

The Founders Dinner Saturday night featured awards and Carl Hicks. (Editor's note: Heather received the Julie Henry Memorial Scholarship Award at this dinner.) Carl is another favorite person and I was seated next to him for dinner. What an honor. He gave a wonderful speech about advocacy and what we needed to do not only as a group, but also as individuals. He said that we don’t have the right to find a cure; we have the obligation to do so. We all need to step up and get the word out. It was a very inspirational speech and well deserving of the standing ovation.

Sunday brought the conclusion of conference. Just like the previous day and a half of events, Sunday was a blur of activity. I attended a few sessions on exercise (this is a good thing even for the PH’er and there will be data released in the next year to support these findings) and investigational agents. Then it was time to pack up and head to the airport.

Conference 2006 was an emotional weekend with friends that make up a new family for me. I learned a lot about not only PH, but people too and a little about me. PH is a horrible disease to have, but those with it, have learned to cope. It isn’t easy but there is hope. Perhaps in Houston 2008, there will be news of a cure.

Heather Koczur


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.