Thursday, June 28, 2012

Conference: A Phenomenal Experience for Patients and Families

By Mary Jo Piatek, PH Patient

Wow, what a great experience this Conference was for me. I learned about PH and understand this disease so much better now. I would like to thank PHA; I was a lucky person to receive a scholarship for the Conference. Without it, it may have been a problem to get there. I went with my sister; both of us were glad we went. She even said she understands this disease a little bit better, as well as understands the way I feel.

It's such a big world out there and sometimes you think you are all alone, but now I know that is not the case. I talked to different people and know we are all in it together.

I can't say enough about PHA and the hard work and dedication the staff put into this; I'm happy I joined and am a part of it. I do wish the disease can be caught much earlier, and one day I hope we have a cure for it.

I was diagnosed 2 1/2 years ago and had never heard of it before. I guess you can say it was a new beginning; sometimes it's still hard to accept. I know there were some people at Conference a lot worse off than me and some were so much better.

All the speakers were great; the Drs. and nurses were just as great. Once again, I thank everyone who is involved. You're doing a great job and it shows. I hope to attend the next Conference in Indiana as well. Keep up the great work and thank you again. It was an experience I will never forget.

An Amazing Conference Fosters Awesome Connections

By Alex Flipse, PH Patient

The Pulmonary Hypertension Association's 10th International Conference and Scientific Sessions took place this weekend, June 22-24, 2012, and it was the best it has ever been! From the Medically Led Sessions to the Patient/Family Breakout Sessions, to the Skill Building Sessions (which I spoke at), it was all AMAZING!!! Meeting all my PHriends from online - Facebook, PHFamily, Spanish Language PHriends - was the best part of Conference by far!

I met PHriends I have known online for many, many years, but never in person - Jen Lalonde, for example! Seeing phriends that I've seen at previous Conferences was awesome!!! Stuart Berwick, Diane Ramirez, Ellen Harris, Migdalia Denis, Marcia Beverly, Ornah Levy - oh so many people!!!

PHA staff was amazing, too!!! Going in to volunteer on a regular basis, I've known PHA staff for some time now, but the work and dedication I saw this weekend was well beyond the call of duty! Thank you! Thank you! Thank you!!!

Members of PHA Australia Attend Conference

By Christopher and Vivienne, Members of PHA Australia

We feel truly privileged to have been invited and able to attend PHA's 10th International PH Conference. It has exceeded our expectations. Although we are all going our separate ways, we know that the friendships formed will continue on.

We are leaving knowing that we are now part of a wonderful PHamily. We cannot wait to get back to Australia to share with our PHamily the wonderful work being done around the world.

To the PHA team, thank you for coordinating such an amazing event. We also thank Joan Godber, our president, and the PHA Australia Committee for allowing us to represent our country at this year's Conference.

Tuesday, June 26, 2012

Kids’ Field Trip Makes a Big Splash

By Meera Salamah

Everyone agrees that this was the best Pulmonary Hypertension conference yet, especially the kids, who were thoroughly impressed by this year's traditional field trip to Sea World! The trip was enjoyable for all ages, even those hard to please teens.

We started our trip by going back to school with educational activities that taught us about many of the sea creatures that Sea World houses, including Polar Bears and Sharks.

The group then moved on to a walking tour of some of the animals that we had just learned about. Valerie from South Carolina says that seeing the beluga whales in the exhibit was her favorite part.

The next and last attraction was of course, a Shamu show called One Ocean! Nicole, Shannon, Jen and Rayni all agree that this was their favorite part of the trip! Shamu just couldn't help but make a big 'splash'. Something interesting that I noticed was that the theme of the show was how one person can make a big difference in the world. I couldn't help but make a connection to PHA's theme, "The Power of One". This is not just coincidence, it only serves as further proof to our motto and adds strength to our message.

Thus, I encourage everyone to put the Power of One to the Test, even kids; you can make a difference despite what people might say or your age. You have that power vested within yourself, and I hope that you put it to use, whether it be as a caretaker for a sibling or a parent, or as a participant in fundraising and advocacy, the Power of One is the wave we all ride to the cure.

Sunday, June 24, 2012

See You in 2014 in Indianapolis!

Save the Date:
PHA's 11th International PH Conference and Scientific Sessions
June 20-24, 2014
Indianapolis, Ind.

Fourteen-Year-Old Mountain Climber Raises Awareness About PH

Fourteen-year-old Matthew Moniz of Boulder, Colo., has astonished the world by being one of the most accomplished young mountain climbers. At only 9 years old, he completed his first expedition, climbing to Everest Base Camp at 17,200 feet and a summit of Kala Patar at 18,501 feet with his climbing partner and father, Mike Moniz.

Since then Matt has continued his passion for climbing and was named one of National Geographic’s Adventurers of the Year in 2010. His enthusiasm and bravery have led him to set the world record for being the youngest person to climb Mount Elbrus, the highest point in Europe, and Cerro Aconcagua, the highest point in the Americas. Matt set another record for climbing every United States high point in just 43 days (50 states in 43 days) — the fastest time on record! He is also the youngest person to accomplish this feat.

Not only is Matt devoted to climbing and breaking records, he is also devoted to friendship. Matt’s best friend, Iain Hess, was diagnosed with primary pulmonary arterial hypertension in 2005 at the tender age of 5. Iain and Matt are like brothers and grew up as next door neighbors. However, as a result of Iain’s PAH, he had to move to a new home at a lower altitude. The distance has not separated the two and they are still closer than ever. Although Iain cannot climb all of the mountains Matt can, he climbed three Flatirons and made it to the very top of the third. The two were featured on “The Morning Show” on CBS.

Since Iain has PAH, Matt has a very unique way of raising awareness about pulmonary hypertension by climbing mountains. He shared all about it at the PHA Tomorrow: Scaling Mountains to Achieve Our Dreams Breakfast this morning.

Saturday, June 23, 2012

PHers Strut Their Stuff in the Fashion Show

Posted by
Diane Greenhalgh
PHA Director, Web Services

One of the fun traditions of Conference is the Fashion Show where PHers show off how they hide or display with flair their pumps and other medical equipment. This year, the event was hosted by PHA Volunteer Services Director Debbie Castro and PH kid Lucas Van Wormer. PHers showed off their PH awareness gear, casual clothing, evening wear, and even a little Spiderman who showed of his Spiderman trick.

Science and Learning for Medical Professionals

Posted by
Diane Greenhalgh
PHA Director, Web Services

PHA is a unique organization in that we represent the entire spectrum of the PH community from patients and caregivers to medical professionals. Our conferences bring the entire community together for education and networking. The programming for medical professionals this weekend included the Scientific Sessions, which focused on "The Genetics of Pulmonary Hypertension." Participants were treated to the latest science presentations from experts in the field and a record breaking number of abstract posters about a spectrum of topics.

Medical professionals are also participating in PH Fundamentals sessions this weekend and doing research in the Research Room. This weekend is such an opportunity for researchers with so many PH patients in one place.

Let Me Breathe

Posted by
Diane Greenhalgh
PHA Director, Web Services

PHA's Conference is an international event. The weekend started off on Thursday with an International Leaders' Summit for association leaders around the world. This weekend has included other events for international patients and medical professionals alike, including a reception, regional meetings and a strategy meeting. Yesterday, J. Paul Adams, a composer from Canada, presented a music video he had created with PHers in Canada. You can watch the video and add your name to the map at The work that PHers around the world are doing is being shared at the International Booth in the Exhibit Hall (right).

Video Blogs from Stu, Dijon and Carmen about Their Favorite Experiences

 Watch as Stu, Dijon and Carmen tell us about some of their favorite experiences at Conference so far.

Kirsten's Favorite Thing

This is Kirsten's seventh Conference and she shares some of her feelings about Conference, and tells us about her favorite thing so far here in Orlando.

Delia and Pain Warriors

Delia Moro traveled from Puerto Rico to attend Conference. She talks about her Conference experience and invites you to visit her Facebook page, PH and Pain Warriors:

Pam Stoked about Third Conference

by Pam Pedersen, PH caregiver

Today has been a most awesome day of learning. Talking with the doctors about medical issues becomes more helpful and more meaningful with each conference. I am here for the 3rd time (Houston, L.A. and Orlando Conferences). The best conference session for us as a couple (my husband has come for the first time) was the Familial/Genetics and PAH session. Drs. Elliott, Chung, Loyd and Wheeler were upbeat and hopeful for the future. There are so many possible new options in the wings for us as PH families. Hope really is a verb. I'm so Stoked!!

Scholarship Recipient Learns about PH

by babyfaceshellie, PH patient

hi all my name is Michelle i am from Tucson, AZ i got a scholarship to come. i am learning a lot a bout p.h.a., it's really fun here i think everyone should get to come at least once. its a once in a lifetime thing.

Kathy Meets Someone Else with the Same Illness

by Kathy Aunean, PH patient

Excellent experience! So many vendors represented, with great information & support (besides fun freebies)! Interaction with others has been DIVINE! I've even met another person with the same illnesses/disorders as me--- we are "a rare bird indeed"! Am here on a scholarship & could not have otherwise afforded it. THANK YOU, PHA! ;)

Standing Room Only at Medically Led Sessions

Posted by
Diane Greenhalgh
PHA Director, Web Services

The Medically Led Sessions, which are presented by experts in the field of pulmonary hypertension for patients and caregivers, began this morning with a bang. We have some great topics and some sessions were standing room only they were so popular. One session, the "Investigational Therapies/Stem Cell in PH - What's on the Horizon" was flowing out the door (see right). Some of the topics today and tomorrow include:
  • Basics of PH: Everything You Wanted to Know about PAH, but You Have to Ask
  • Guinea Pig or Hero - The Journey through Clinical Trials
  • Defensive Dining: Eating to Maintain Health and Avoid Complications - How to Eat Smart
  • Surgery and Anesthesia in Patients with PH: What You Should Know
  • Emergency Situations and Primary Care Issues
  • PAH Drug Development: The Pipeline Runneth Over
  • Diagnostics in PH - What Do All the Tests Mean?
  • PH in the Setting of Liver Disease - What Makes it Different?
  • Teeth, Bones and Other Surgical Problems for Kids with PH
  • Education for the PH Caregiver
All sessions will be available on PHA Classroom in a few months for everyone to view.

From the Famous Kitchen Table

Posted by
Diane Greenhalgh
PHA Director, Web Services

This year's Conference theme is The Power of One: From the Kitchen Table to Around the World. The Pulmonary Hypertension Association began by four women meeting around a kitchen table in Florida. Our 10th International PH Conference and Scientific Sessions has brought us all back to Florida where we were founded, and at the Conference opening yesterday we got to see the famous kitchen table and the three remaining women who sat around the table at that original meeting: Pat Paton, Dorothy Olsen and Judy Simpson.

Last night at dinner it was an amazing sight to see the huge ballroom filled up. As one of the speakers pointed out, we had gone from one kitchen table to 140! The kitchen table is displayed in the Exhibit Hall, and you can see me above taking in this precious moment.

More Video Blogs, or Vlogs, from Conference

Terry, Karen and Sharon say a few words about their Conference experience.

PH Community Connects at Meet-ups

By Nicole Northrop, PHA Roving Reporter

Friday morning, the Crystal Ballroom was filled with Conference attendees, all looking forward to meeting people just like themselves. As attendees walked in, they saw tables with different colored tablecloths throughout the room. Each table was labeled with one of eight Meet-up categories: “Caregivers,” “First-time Conference Attendees,” “Generation Hope,” “Families of Children and Teens with PH,” “PHA Community,” “Newly Diagnosed,” “Patients with Associated Illnesses,” and “Facebook and PH Online Community.”

The “Caregivers” table had several people who currently care for their loved ones. Wendy Foss, caregiver for her husband, Jerry, says that caregiving, although it’s stressful and tiring, is fulfilling because you are caring for the ones you love. The “First-time Conference Attendees” table was quite large, as many people have never been to a PH Conference before. One attendee, Elizabeth Rost, is attending Conference for the first time even though she has had PH for four years. The “Generation Hope” table had several young adults standing around it, all talking about PH. The “Families of Children and Teens with PH” table was populated with children enjoying the arts and crafts provided at the table. Rayni Worley, a 15-year-old at the table, has had this illness since she was 4.

The “Newly Diagnosed” table was populated with some patients who have only had PH for a short while before Conference. The “Patients with Associated Illnesses” table had several people who deal with other illnesses along with dealing with the stresses of PH. The “Facebook and PH Online Community” was populated with many different people, since many people use the PH online communities.

All in all, the Meet-ups were a success. Attendees got to meet several people who may be very similar to them. Many people seemed to be having a great time, and these same people look forward to continuing to have a great time during the rest of Conference.

Attendees Mix and Mingle at the Meet-and-Greet

By Nicole Northrop, PHA Roving Reporter

Walking into the Crystal Ballroom at the Renaissance Orlando at SeaWorld®, one would see many booths, delicious food, eager people, and fun activities. These aspects are what made the Patient and Family Meet-and-Greet at PHA’s 10th International Conference so enjoyable. The many people crowded into the ballroom were sporting a paper carnation. Each carnation was a different color to represent the many regions in which these people live. Every person, patient, caregiver and medical professional alike, seemed to be enjoying Conference. The ballroom was filled with happy chattering with people they had met.

Everyone I interviewed seemed to be enjoying Conference very much so far. Several people were looking forward to the different aspects of Conference. Stephanie Anderson, a patient with primary PH, said that she was looking forward to meeting new people and making new friends. Her caregiver and sister, Stacy Hise, was looking forward to hanging out with her sister.

Fun and food were all around. One could dine on such things as chocolate-covered strawberries and lemonade. There were Minute to Win It games, in which participants had one minute to complete such tasks as bouncing a balloon in the air, navigating cotton balls to a bowl using their Vasoline-covered nose, and solving a puzzle of cut-up cereal boxes. There was also a table in which a woman would paint your face or make you a wonderful balloon animal. After receiving a makeover and a balloon hat, one could go over to the photo booth and take pictures with several props. A raffle was also held, in which several people won such prizes as artwork, tickets to theme parks, and chocolate.

The whole event was delightful. As the multitudes of people walked around booth to booth, they got to experience fun, food, and friends, all while dealing with the everyday struggles of PH.

And We Party!

Posted by
Diane Greenhalgh
PHA Director, Web Services

Young adult PHers, the Generation Hope, partied at a reception last night with indulgent treats and great friendship. Even after a full day, they were full of energy at the opportunity to connect with PHers their own age from across the country. While I'm at the top end of this age group, I popped in just to check it out and couldn't help but stay even though my legs were screaming to stop. This is the magic of Conference! I can't get enough of connecting with people I only get to see every two years. As the speakers said last night at dinner, it's one big PHamily reunion.

Friday, June 22, 2012

Learning New Skills to Fight Back

Posted by
Diane Greenhalgh
PHA Director, Web Services

This morning during pre-Conference activities were the first round of skill building sessions. I was a panelist for the Harnessing the Power of Your Online Social Networks session. I appear top left in the photo with the other panelists (clockwise) Pam Pedersen, Alex Flipse and Sean Wyman. They did a great job of sharing the creative ways they fight for the cause online. Among other things, Pam used a video her daughter created to educate her Members of Congress about PH, Alex posts a Question of the Day (QOTD) on Facebook for PHers to respond to that allows people to share and learn from each other, and Sean video blogs, or vlogs, about issues he faces as a student.

You can get involved online and harness your social networks for the cause in small or large ways. Get involved online

Conference Attendees Activate!

Carl Hicks spoke earlier at the Conference opening session about getting involved by contacting your Members of Congress to support the Tom Lantos PH Research and Education Act. The almost 1500 people here this weekend could make a huge impact on Capitol Hill if Members hear from all of us. The PH community responded. The BlogosPHere here in the Exhibit Hall has been swamped during every break between sessions since. You can participate from home and be counted in the Conference Advocacy Challenge by contacting your Members before Conference ends on Sunday. Contact your legislators now

What Conference Means to Me

Reporting directly from Conference! See what Conference means to Sean, Karen, Laurie and Ellen.

Tuesday, June 19, 2012

$226,855 in Scholarships Awarded

Posted by
Rebecca Gifford
PHA Meeting Planning Associate

Hello all! I write this only hours before I head down to Florida for Conference and I couldn’t be more excited! I have had the privilege of spending the last few months working on our 2012 Conference Scholarship Program, which means I’ve probably spoken to a large number of you. The popularity of our program grew tremendously this year. In 2010 we received 376 applications; this year that number grew to 412! And out of that 412, 283 were able to accept our scholarship offer, compared to 186 in 2010. This year we gave out $226,855 in scholarships!

Here is a little background on the community attending this year thanks to the generosity of our donors:

Out of the 412 applications we received (with some being represented in more than one category):
  • 278 have never been to Conference
  • 9 were diagnosed in 2012
  • 29 were diagnosed in 2011
  • 47 were diagnosed in 2010
  • 48 are parents of children with PH
  • 122 are Support Group Leaders or Support Line Volunteers
Make sure you check out the scholarship page so you can see the list of all the organizations and individuals who continue to make this program possible.

I’ll see you in Orlando!

*Please note all statistics reported are as of COB 6/8/2012

Not Attending PHA’s Conference? Here’s How You Can Participate

PHA’s 10th International PH Conference and Scientific Sessions will be the largest gathering of PH patients, families and medical professionals ever assembled. At almost 1500 registrants, our Conference is sold out!

For those of you who aren’t able to join us in Orlando this week, we have the following ways you can participate from home:
In the upcoming months you will also be able to listen to and watch session recordings on PHA Classroom.

Monday, June 18, 2012

From a Kitchen Table to Congress: Join the Conference Advocacy Challenge!

"Never doubt how important your voices are. We need to hear from you, and our bosses need to hear from you about what is important to you."
–Sarah Mabry, Health LA in Senator Casey’s office

In one week, medical professionals, patients, caregivers, family members and loved ones will gather in Orlando for PHA’s 10th International PH Conference to learn about PH, connect with others and further the cause toward a cure.

Many will stand up and be counted in PHA’s Conference Advocacy Challenge as a community in favor of more PH research, medical education and public awareness about pulmonary hypertension. The PH community has been flooding Congressional offices all year with emails, calls, and visits to urge Members of Congress to cosponsor the Tom Lantos Pulmonary Hypertension Research and Education Act.

Conference is a chance to add 1500 voices to our cause. Write a letter urging your Members of Congress to cosponsor this bill.

Sign a Letter
Joining the Challenge is easy, and it only takes a few minutes. Most importantly, you don’t have to be a Conference attendee to join the Kitchen Table to Congress Challenge!
  • At PHA’s Conference! Stop by PHA’s Programs and Services Booth in the Exhibit Hall and sign a letter.
  • At Home! Visit and send your letters with a few clicks of the mouse.

Friday, June 15, 2012

Beta Testing for PHA Online University to Occur at Conference

PHA Online University is PHA’s premier source of education and resources for medical professionals, with courses available for CME/CE credit; digital copies of PHA’s quarterly medical journal, Advances in Pulmonary Hypertension; recordings of sessions from past conferences and symposia and much more!  This year, PHA Online University is undergoing a major redesign to help make the site more dynamic and interactive for its users. 

The new site is set to launch in late August or early September, but before launch, PHA will be beta testing to ensure that everything is ready. To help with this process, PHA Online University is offering Conference attendees the chance to get a sneak peak at the new site and offer their input. Beta testing will occur on Friday, June 22, and Saturday, June 23, in the Exhibit Hall. Stop by and let us know what you think!

Current Site:

New Site:

Thursday, June 14, 2012

Save Time by Filling Out Research Room Forms Ahead of Time

Research Room Enrollment Forms are now available online. Save time at PHA’s International PH Conference and fill out your paperwork before you arrive at the Research Room. This year, the event welcomes researchers studying topics from genetics of pulmonary hypertension (PH) to autoantibodies in pulmonary arterial hypertension (PAH) and even psychological aspects of PH. Patients and non-patients are encouraged to participate!

Fill out your forms now

Wednesday, June 13, 2012

Conference Sold Out!

Due to overwhelming response, PHA's 10th International PH Conference and Scientific Sessions is SOLD OUT. We are sorry to disappoint, but at this point we are unable to take advance and on-site registration.

If you are not attending Conference, you can follow Conference happenings here on Table Talk: Wired, on PHA's Facebook page, and Twitter (#PHAConference). Also, recordings of many of the sessions will be available on PHA’s website over the coming months.

Meet Your Conference Roving Reporters!

Earlier this year PHA put out the call for aspiring teen journalists in the PH community to participate in our Roving Reporter contest. The contest winners will be assigned activities to write about each day at Conference for the next morning’s edition of Table Talk, the Conference daily print newsletter distributed to Conference attendees.

Congratulations to Olivia Hess, Nicole Northrop and Meera Salamah, our Roving Reporters for PHA’s 10th International PH Conference and Scientific Sessions! Read on to meet these teens, and look for them at Conference as they cover each day’s happenings. They might even interview you!

Olivia Hess
Olivia is the sister of PH patient Iain Hess. She says, “For fun, I love to dance, ski, swim, play sports, and spend time with family and friends. Two years ago at the Conference in California, I had such a great time meeting people and going places. I am really looking forward to the Conference overall, being able to see the friends I made, and everything else it has in store. I'm so happy to be able to be a Roving Reporter. Even though I don't have PH myself, I’m really excited to be able to show other people my perspective of what my brother and other people have to deal with on a daily basis.”

Nicole Northrop
Nicole was diagnosed with PH on January 22, 2010. For fun, she enjoys playing on the computer, drawing, writing and exploring photography. Nicole is really looking forward to this Conference because it will be her very first time at a PHA International PH Conference! As a Roving Reporter, she is looking forward to the opportunity to practice her reporting skills, enjoy herself and have fun at the largest gathering of PH patients, caregivers and medical professionals in the world!

Meera Salamah
Meera was diagnosed with PH in April 2008. “I love reading and painting and cooking (especially the eating part). I also enjoy writing short stories, and I spend a lot of time with my family,” she says. “At Conference, I am really excited to meet new people, learn about new treatments, volunteer and be a Roving Reporter! I love to write and this really gives me an opportunity to have a lot of fun and stretch my wings.”

Tuesday, June 12, 2012

Key Information for Conference Attendees

PHA’s 10th International PH Conference and Scientific Sessions is right around the corner. Read on for some final information and tips about what’s happening in Orlando!

Conference Hotel Information
PHA’s 10th International PH Conference and Scientific Sessions will take place at:
Renaissance Orlando at SeaWorld®
6677 Sea Harbor Drive
Orlando, Florida 32821

Shuttle Information
If you are staying off-site at the Residence Inn Orlando at SeaWorld®, SpringHill Suites Orlando at SeaWorld® or Orlando World Center Marriott, PHA will be providing shuttle services between these locations and the Renaissance Orlando at SeaWorld®. Shuttles will be available from Wednesday – Sunday for Conference attendees. Schedules for the shuttle service will be available at the front desk of each hotel upon check-in, as well as at PHA’s Conference Check-in and On-site Registration booth at the Renaissance Orlando at SeaWorld®. Shuttle pick-up and drop-off will be located in the Oceans Porte-Cochere at the Renaissance Orlando at SeaWorld®.

The Renaissance Orlando at SeaWorld® offers both valet and self-parking options. Self-parking is available for $16 per day. Valet parking is available for $21 per day. All guests driving hybrid cars recieve complimentary valet parking!

Conference Program Books
Want a head start on planning for the sessions you want to attend on-site? The Conference Program/Handout book (PDF) is now available to download on PHA’s Conference website. Use this book to view titles, descriptions and scheduled speakers for all of the sessions at Conference. The Medical Education Program Book (PDF) for medical professionals is also available to download. This separate book contains information about the Scientific Sessions and Fundamentals of PH: Continuing Education for Medical Professionals sessions.

Travel Tips
Patients are encouraged to talk to their medical care team to plan their participation in Conference. For more information on traveling with PH, tools to help with your planning and a list of local resources visit our travel tips page.

PHA Membership
Every International PH Conference attendee must be a current member of PHA to attend. If you need to renew your membership or become a new member, you can easily do so before coming to Conference by contacting 301-565-3004 x756 or You can also check your membership status on PHA’s website if you have a user account.

Kids’ Room
Kids have fun at Conference too! PHA provides a supervised Kids’ Room for children and teens (3-16 years of age; no diapers please) who accompany their parents to Conference. Games, crafts, field trips and other fun activities have been planned. Participation in the Kids’ Room is free of charge, but Conference registration and Kids’ Room reservations are required. Visit the Kids' room page for more information or contact 301-565-3001 x800 to make reservations.

Plan to “Stick it to PH” – Participate in the Research Room
PHA’s International PH Conference provides researchers with the rare opportunity to collect information and samples from a large number of patients at one time through the Research Room. Your participation will provide researchers with a clearer understanding of pulmonary hypertension and help bring them one step closer to finding a cure.

Save time by filling out the Research Room Enrollment Form before coming to Conference! Print the form available on PHA’s website and bring it with you to the Research Room. This information can be shared by all of the researchers participating at the event, so you will only need to fill it out once to contribute to multiple research initiatives!

Research Room Hours:
Friday, June 22: 7:00 a.m. - 5:00 p.m.
Saturday, June 23: 8:00 a.m. - 6:00 p.m.
Sunday, June 24: 8:00 a.m. - 10:30 a.m. *Updated!

Conference Connectivity
Don’t forget to follow along with Conference online as it happens!
  • Conference Blog: Read blog posts from other attendees about what they are experiencing at Conference by visiting the Conference Blog throughout Conference. Want to submit a blog post of your own? Check out the BlogosPHere in the Exhibit Hall or submit from your own computer!
  • Twitter: Let your PHriends know what a great time you are having by sending live tweets from Conference with #PHAConference. Also don’t forget to tag PHA (@short_of_breath) in your tweets!
  • Facebook: Share your excitement with others who were unable to attend! Like PHA on Facebook and share your experience by visiting PHA's Facebook page.
  • Mobile App: Gain instant access to Conference information, agendas, speakers, alerts and more by downloading the Conference mobile application to your phone! View download instructions
Be Part of PHA History with Just One Email
Stand up and be counted by contacting your senators and representative about the Tom Lantos PH Research and Education Act anytime between now and our International PH Conference in June. We’re counting each contact and will announce the results of everyone’s effort at Conference. The Conference 2012 Advocacy Challenge needs everyone whose life has been touched by PH — patients, medical professionals, family and friends, neighbors and co-workers — to take part! Together, our message to Congress will be loud and clear! Learn more and be counted. Visit the Conference Advocacy Challenge page or contact Elisabeth at 301-565-3004 x753 or so our count can be complete.

Monday, June 11, 2012

What You Are Most Looking Forward To

We asked our online community to complete the following sentence. This is how they responded.

At PHA's upcoming International PH Conference I am most looking forward to....
  • knowing many people with this condition and learn about new research super excited !!
  • I can't decide but probably just meeting people and learning more about PH. :-) 
  • For me, meeting new phriends and catching up with old phriends. Also, volunteering! 
  • ‎:) can't wait !!!
  • hearing about it. LOL!! 
  • learning new things and meeting friends! 
  • Spending time, laughing & having fun with phriends. 
  • podcasting!
  • Seeing all my colleagues and learning something new! 
  • smiling faces and people who can motivate me to do fund-raising
  • Meeting other people who are going through the same illness as me. 
  • Everything. I am looking very forward to this conference. Thanks to the help of PHA and others who donate to scholarship fund I am able to attend.
  • Everything! It's our first conference! 
  • motivation, learning, and meeting online friends. 
  • learning about nutrition and what I can do to support other PHers and how to raise awareness. Soooo thankful to those that support the scholarship fund so I get to go! 
  • Learning what is happening in the research field, and just experiencing being with other people with this disease.
  • Getting to know other people my age who are struggling with PH. 
  • See my doctor talk there. 
  • education and meeting fellow PH'ers 
  • Wish I could be there to learn all there is to learn & meet others with the same issues. Hope there will be audio and/or videos for those of us who don't have the money to attend. (editors note: recordings will be available after Conference) Have fun everyone! 
  • meeting other people who "breath like me".

Thursday, June 7, 2012

More Than Just Breakfast…the Most Important Meal of the Day

Posted by
Amanda Nguyen
PHA Medical Services Intern

Dr. Robyn Barst, MD, is seen here talking to patients about
young adults with PH transitioning to adulthood during the
‘Dine with a Medical Professional Breakfast’ at the 2010 Conference.
How often do you get to have a conversation with a pulmonary hypertension expert over a nice meal? Many of us never get this opportunity. The formality of a doctor’s visit may make it difficult for some to have an open dialogue with their healthcare provider. At Conference, we encourage active conversation between patients and medical professionals with the “Dine with a Medical Professional Breakfast.” This unique gathering brings everyone together for a lively discussion about PH-related issues.

This special breakfast is a two-part meal session. The first half will feature a panel of two doctors and one nurse who will be answering questions about PH. The second half of the breakfast is a breakout discussion that takes place at the individual tables. Each table is assigned a different discussion topic and a medical professional ready to answer questions. Upon entry into the dining room, attendees will be given a map of the tables and topics to choose from. This interactive activity generates conversations about specific PH issues that are of interest to the patient.

This year’s breakfast, “Empowered Patients: Ask a Medical Professional,” will take place the morning of Saturday, June 23. Dr. Karen Fagan, MD, will be the moderator of a two-person panel featuring Dr. Robyn Barst, MD, and Traci Stewart, RN, MSN. You can look forward to a host of topics for the dine with a medical professional component of the breakfast ranging from general PH issues to specific topics about pediatric PH, various associated diseases and much more. There will also be several topics for Spanish speakers.

Medical professionals have always valued this event at Conference as a way to interact with patients in an informal setting. Traci Stewart, RN, MSN, one of this year’s panelists said, “The Power Breakfast is a fantastic opportunity for medical professionals and patients to talk together outside a clinical setting and chat about the PH issues that matter the most to them.” Before embarking on another busy day of Conference, don’t miss out on the chance to network with other patients and doctors and of course, enjoy a lovely breakfast at the same time.

And a quick reminder that online registration closes tomorrow at 3 p.m. If you haven't already, register now!

Monday, June 4, 2012

ALERT: Online Registration Closes Friday, June 8 at 3 p.m. ET!

More than 1,100 PH community members have already registered for PHA’s 10th International PH Conference and Scientific Sessions taking place June 22-24 in Orlando, Fla. If you haven’t registered yet, you can still take advantage of online registration until Friday, June 8 at 3 p.m. ET. Don’t miss out on this opportunity to join your fellow PH community members!

Register now

Friday, June 1, 2012

Shamu, Mandalas, Trivia Games and More… Learn What’s in Store for the Kids’ Room

Posted by
Michal Rachlin
PHA Kerry Bardorf Family Support Program Associate

We are looking forward to a very exciting Conference Kids’ Room this year, with lots of fun activities for teens, tweens, and kids alike. Is your child attending Conference? Read on to learn some of what we have in store!
Field Trip
This year’s field trip is to (drumroll please)…….. SeaWorld Orlando! The field trip requires pre-registration; children under age 6 must be accompanied by an adult.

We have an exciting itinerary planned, including the ever-popular Shamu Show. Field Trip forms MUST be received by June 11 – visit our Conference site for full details!

Activities Galore!
This year’s Kids’ Room is going to be action-packed, with activities geared to different age groups. Trivia games, crafts, board games and more – including the traditional Wii giveaway drawing on Sunday morning. A full itinerary will be available at the Kids’ Room when it opens on June 22 at 12:30 pm.

On Friday afternoon, Megan Mallory, PHA’s Associate Director, Publications, is leading a creative expression workshop on mandalas for kids and tweens. On Saturday morning Megan Mallory is leading a creative expression workshop for teens on journaling. On Sunday morning, Colleen Brunetti, PH patient and PHA Board member, is leading a workshop on feelings and American Sign Language for ages 7 and under.

We hope your children can join us for these exciting programs!