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Live from Houston! Reports from Conference Weren't able to attend PHA’s Conference this weekend? Want to hear what happened? PHA's webmaster Diane coordinated reports on the latest from Conference as they happened! Please note, the newest reports were posted on top so they are in reverse chronological order (similar to blog format).
What I'd like to leave you with for now are some fun photos. Certainly more will be coming in the next few weeks. See y'all again soon! Oh, and don't forget the e-Learning Events we'll be hosting, including 2 Conference follow-up events. These are events you will be able to participate in from the comfort of your home or office. Check out the schedule
Conference has truly been a team effort put on by the entire PH community. More will come in our newsletters about the many people who helped make Conference possible. Many people have worked tirelessly, and some for the past 2 years since last Conference. For right now I would like to thank the head orchestrators, so to speak, who directed everyone to put on such a great "show," as my AV guys would say. They are the ones who have been living and breathing nothing but Conference the past few months. Thanks, y'all!
Conference Committee Co-Chair Linda Carr is pictured here with Scientific Leadership Council Chair Dr. David Badesch and Dr. Torres.
Conference Committee Co-Chair Joanne Sperando-Schmidt is pictured here with her father, John.
Pictured here are the PHA staff, a great team to work with, and all put in so much work, but really I included this picture because it's the only one I managed to get of our PHA Conference planners (as they were always running around), who I really want to thank. Jennie Carman is third from left in the bottom row, and Jess Hardy is right above her. They hopefully will be taking a well-deserved vacation sometime soon!
As I mentioned earlier, my favorite part of Conference is the Journeys Luncheon on Saturday where patients and their doctors (or nurse) tell their story, their PH Journey. The Journeys Luncheon is a tradition since the beginning of PHA Conferences, and this year's didn't disappoint.
Next came Joe Barnes and his nurse Arlene Schiro, N.P. (the nurse on the left in the tattooed nurses below). Joe talked about his bad reactions to Flolan and the wonderful support his doctors and nurses provided him through it all. He made us cry with his story of how he wanted to give up and the nurses and doctors convinced him to not give up and to try Remodulin instead. And he made us laugh as he told his story with humor. It was also inspirational to hear that he is now doing a lot of the things he thought he'd never be able to do. Last but not least, Donna Pederson spoke with Dr. Myung Park. She talked about living with PH in college and trying to find the right treatment. Her experience has inspired her to go into nursing school. She spoke with such eloquence and poise, I believe there's a future for her in public speaking as well. Donna talked about the travel she has done internationally and facing other challenges to do the things she wants to do while balancing life with PH. As Joanne Sperando-Schmidt said afterwards, the luncheon was a "shot of inspiration."
The message for this year's keynote was "Hope is a Verb." Carl talked about how when he learned that PH patients were having a lot of difficulty getting heart-double lung transplants because of the transplant rules, he and others lobbied the federal government to make changes, changes that have led to PH patients getting the transplants they need, including Carl's daughter Meaghan who is now over a year out from her transplant. There was not a dry eye in the house. Carl has a way of speaking from the heart about the heart-wrenching things he goes through worrying about his daughter. When PHA Board Chair Dr. Mike McGoon introduced Carl he said that Carl is his hero. And if you've ever met Carl you'd understand that it wasn't just something he said. Next to the Journeys lunch, which I'll be sure to talk about later, my favorite part of Conference is working with Carl before his speech as he goes through his presentation with me to make sure it will run smoothly (I do AV at Conference). He is a truly remarkable speaker, so it always throws me off when he is nervous beforehand. He is so committed to getting it right, to truly inspire people, that he goes the extra mile beforehand to prepare, and you can see it in the results. Carl Hicks is certainly one of my heros because of all the work he does fighting for PH patients, including the 111 Congressional visits he did in just two days this past year, but also because he gives of himself so completely when he speaks that you can't help but be inspired to action. He offers hope and action. Hope is truly a verb. Not to be outshined by Carl's emotionally moving speech, Drs Vallerie McLaughlin and Mike McGoon offered equally impressive speeches.
Dr. McGoon, or Mike as he insists the staff call him, ended out his 2 year term as PHA Board Chair with a speech about "Progress of the Past, Promise of the Future." Sounds pretty esoteric, but his speech was far from it. He talked about the concrete progress of the PH community over the past years and where we are headed. With analogies to Physics terms such as mass, momentum, and velocity, you would think he would have induced scary flashbacks to high school Physics, but it was actually a funny yet poignant way of showing how we are truly moving forward because, as he put it, "People + Action = Success."
While PHA is the PH association for the United States, we serve as the hub of information-sharing for the international PH community, and PHA's 8th International PH Conference and Scientific Sessions was truly international. PH associations from around the world shared the stories and lessons they've learned from the work they do in their nations at presentations scheduled at the International Booth (pictured below). At this morning's breakfast we heard about the progress made in their countries from Antonio Aizpuru from Mexico, Noriko Murakami from Japan, Darren Bell from Canada and Alena Gubikova from the Czech Republic. It was great to hear about all the progress PHA Japan has made since they started when only Flolan was approved and the health system didn't cover it. There are now 4 approved drugs for PH in Japan. The representatives from the international associations also held a meeting today on ways they can collaborate in the future.
Also at this Conference we had more materials and sessions in Spanish, including the Spanish version of a good portion of this Conference website. We had Spanish translators on hand as volunteers at the registration booth to help with any questions Spanish-speaking attendees might have. Also at the breakfast this morning, we launched a new video about the International PH community. View the video (wmv)
Our PH community is filled with incredible people doing some pretty incredible things. So it's often difficult to choose the award winners each Conference, but somehow our Award Committee does just that. And they find some of the most dedicated people you'll ever meet. I've mentioned some of the awards given out already, but at dinner we just saw my favorite ones given out.
You really have got to read about all the great achievements of these outstanding PHers. Check out the descriptions of why they were given these prestigious awards (PDF)
Another award given out, and a surprise to its recipient, was an award given to PHA's lobbyist on Capitol Hill, Gavin Lindberg (pictured here), for going above and beyond in the advocacy work that he does on PH. In 2000 when Gavin started lobbying for PHA, the PH Research Act had 1 co-sponsor. With the help of his tireless efforts, the PH Research Act of 2005 had 247 co-sponsors.
People are really excited to participate. Some prefer behind the camera so this gives them the opportunity to participate without being in the limelight. But they are not having any trouble finding attendees to share their poignant stories of their life with PH and their favorite Conference moments. Here you see PHA's Advocacy & Awareness Director Katie Kroner interviewing a PH patient on one of the small and easy to use Flip cameras. Be sure to catch her story, and the numerous others being recorded, after Conference here and in the Journeys section. If you are interested in participating in Video Journeys post-Conference, contact Nathan at journeys@PHAssociation.org.
Here's a picture of an impromptu meeting, much like many others happening at Conference, of PHA board member Betty Lou Wojciechowski talking with representatives from PHA Australia about tips for forming a support group.
Also awarded at the opening ceremony were the Friends of the Family Awards. The corporate award went to United Therapeutics for their support o the PHA Support Group program in the form of a $1 million endowment that is making our Support Group Leadership Institute a reality. The foundation award went to TCF Foundation for their support of PHA over the years totaling in $100,000 towards PHA's research program. We have a lot of great, generous corporate sponsors that help make the programs at PHA's Conference possible. Check out a full list here
This Conference we had a bunch of pre-Conference activities, even more than at previous Conferences. New this year was the patient Meet & Greet last night. I wasn't able to get over there because I was in the speaker-ready room where presenters dropped off their PowerPoints for us to download and test, but I heard from patients afterward that they had fun. They were also handing the personal cards they received to hand out to the people they meet so they can stay in touch. Also new this year, we had networking sessions for regions, parents and of course, the online community. Check out some of the people who stopped by in the picture below. They are wearing nametags with their online handle, or the name they go by online, so they can recognize their online PHriends.
More about pre-Conference and other stuff going on later, but I have to run to do a web demo on the message boards, chats and listservs. Hope we get more online PHriends. :)
One of the newest features at Conference will be our Journeys Café where attendees will share their personal stories about their experience at Conference and life with PH. We will be posting these stories so you can hear directly from attendees about the Conference. And Coming to this Page After Conference…
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This Conference has been a great mix of networking among our PH family, having fun together, gathering inspiration for the fight ahead, and with a whole lot of learning thrown in. The audio from the 
First went 10 year old Darby Hetrick (pictured with her parents) and her doctor Brian Hanna. Darby talked about the ups and downs of her Journey, including a few funny stories, such as when Dr. Hanna babysat her and her siblings and insisted on playing monkey in the middle with them. An eloquent speaker at such a young age, it was inspiring to hear, especially the part about how she's now on a treatment that is allowing her to do a lot more of the things she should be doing as a kid. 
We've had 3 moving keynote speeches this weekend. Carl Hicks (pictured with Joanne Sperando-Schmidt) launched Conference with a moving story of his journey with his family as his daughter has fought PH. If you have never heard Carl speak I seriously recommend you remedy this immediately by ordering the 
Dr. McLaughlin (pictured with our illustrious President Rino Aldrighetti at today's Scientific Leadership Committe meeting) talked about the latest research and spoke with such elloquence, there were times I was quite surprised at how quickly she could say such tongue-tying words and complicated theories yet make them easily understandable to the average joe like me. I was excited to hear about all the potential treatments and advancements towards a cure in the pipeline.
Outstanding PH Citizen: Joanne Sperando-Schmidt
Even more incredible was the lunch presentation of the PHA Award for Excellence in PAH Care to Dr. Robyn Barst for her lifetime dedication to furthering the cause of finding a cure for PH. It was very moving to hear her patients and family members speak about the impact she has made on their lives, and point of fact in saving their lives. Dr. Barst is pictured above with Carl Hicks, a PH parent of one of Dr. Barst's patients, who says that he is "the president of Robyn Barst's international fan club." She has so many accomplishments, I'm going to refer you to the link above to read all about her so I don't miss any. But her career mirrors the roadmap of the progression of discoveries about PH as she was heavily involved in the developments along the way from the very beginning of PHA. 
Speaking of the best and brightest, our allied health professionals are also here in force. The PH Resource Network had their meeting and dinner Thursday night and they are busy helping out here at Conference as speakers on panels with the doctors at sessions. But some nurses are also manning the PHA booth to answer questions and are also staffing the nurse on call program for patients who may have medical issues here at Conference. Pictured here are 3 nurses sporting our fun Conference temporary tattoos as they man the PHA booth. Talk about 3 strong women! 
Our Journey of Hope and Discovery at this Conference is not lacking in the discovery department. Our PH scientists, the clinicians and researchers who are doing the cutting edge research in the ever advancing field of PH, had a Scientific Sessions yesterday. Dr. Karen Fagan, this year's Scientific Sessions Chair (pictured here in between PHA Medical Services staff Rebekah & Rachel), and the rest of the committee did a fantastic job in organizing a day of scientific presentations and abstract viewing. All the presentations and abstracts will be available online post-Conference in the 
The theme of this conference is A Journey of Hope & Discovery. So how appropriate that PHA's 
Here are a bunch of Accredo employees working with the photographer to get a picture of them & their PHA Corporate Cup, which they were awarded with at Friday's Conference Opening ceremony. PHA Corporate Committe members competed in a race on employee giving and Accredo employees beat out the competition. 930 employees donated nearly $34,000 to PHA for the competition and Accredo matched their donations bringing the total to almost $70,000!
