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: www.facebook.com/PhAndPainWarriors

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.

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.

See You in Orlando!

Have safe travels and see you in Orlando!

• Travel Information & Tips
• Program books to plan your schedule: Patients/Caregivers | Medical Professionals

$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:

• Be counted in the Advocacy Challenge by sending a letter to your Members of Congress 
• Attend a telephone patient support group meeting taking place from Conference Thursday night. Register now 
• Follow what’s happening on
• Conference blog
• PHA's Facebook page
• Twitter: #PHAConference

In the upcoming months you will also be able to listen to and watch session recordings on PHA Classroom.

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 www.PHAssociation.org/TomLantosPHResearchAct and send your letters with a few clicks of the mouse.

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: