Save the Date for 2016!

Join us in Dallas, Texas, June 17-19 in 2016!

What's Next?

Another PHA Conference has ended! It's sad to have to leave all of our PHriends and the fun and education we had this weekend. You can continue your education on PHA Classroom (patients and families) and PHA Online University (medical professionals), where all the recordings will be posted in the coming months. If you were inspired by Diane Ramirez to get involved, check out our website for a ton of ideas and tools.

Thank you to everyone, especially our volunteers and sponsors, who made Conference possible.

Young Conference Attendees Enjoy Saturday Field Trip

By Karen Lovett, 2014 Conference Reporter

The Children’s Museum of Indianapolis strives to create extraordinary learning experiences. Today, young ladies and gentlemen visited and showed them the power and strength of the younger attendees of the PH Conference.

With a variety of topics of interest to choose from such as China, trains, dinosaurs and the contribution of children to improving the world, there is something for almost everyone.

Today’s visitors have a few suggestions. Maren, from Alabama, found a love of dinosaurs when she saw the cast of dinosaur bones. Dev, from Ontario, thinks the Take me to China exhibit was the most fun. Jalen, from Missouri, loved the Egypt archeology exhibit. Cameron, from Oklahoma, thinks that the Fireworks of Glass exhibit was something you just can’t miss. Many of the young attendees, like Julia from Alabama, picked The Science Works exhibit as their favorite – especially Israel, from New Mexico, who built his own boat. All of these powerful young attendees seemed to have had a blast.

To learn more about the museum, visit its website at www.childrensmuseum.org.

PHers Strut Their Stuff at the Fashion Show

Written by Marylin Hanft, 2014 Conference Reporter 
Photos by Karen Lovett, 2014 Conference Reporter

Put 10 makeup and hairstylists, 29 models and a dozen or so PHA staff members in a large room, and what do you have? The 2014 Conference Fashion Show! As everyone filed into the backstage area with 2 1/2 hours to go to showtime, controlled chaos ensued.

The estheticians worked their magic on hair and makeup, turning every model into a beauty. PHA staff member Chelsea and her staff kept everything moving as we all donned our first outfits and nervously got in line. "I'm FIRST?! But I'm not even sure what I'm doing!" "You'll do fine. Relax and enjoy the fun." I took that advice to heart, relaxed and had one of the most enjoyable times of my life.

Cute kids, mostly girls, emerged from the hairdressers' chairs sporting gorgeous curls, got into adorable outfits, and got in line. Ladies who had arrived without makeup or fancy hairdos were transformed into runway-ready beauties, first donning casual wear then more formal attire.

The lone male in the groups arrived wearing his purple zebra cape and hat with panache (pictured right). Our MCs, Debbie and Lucas, did an awesome job of reading the scripts that participants had provided and leading the "Where's the pump" game.

Out of chaos came laughter and a show that went off without a hitch. The audience cheered us on and made all of us feel very special. Ornah in her wedding gown made a lovely end to the show as we all gathered around her for our final bow.

What fun we had! What memories we take away!

Team PH Crosses Finish Line a Day Earlier Than Expected!

Team PHenomenal Hope crossed the finish line on their 3,000 mile Race Across America last night a good day earlier than expected. PH community members gathered at the finish line in Annapolis, Md., and via Skype from PHA's Conference in Indianapolis, Ind., to cheer them on and congratulate them on such an amazing feat. You women are truly amazing!

Post by Team PHenomenal Hope.

PH Community Interview: Perry Mamigonian

Support group leader and pulmonary hypertension patient from Fresno, Calif., Perry Mamigonian shares what he loves about Conference.

PH Community Interview: Support Group Leader and PH Patient Aletha Ellison

We caught up with Aletha Ellison, a pulmonary hypertension patient and support group leader, in the Exhibit Hall by the blogosphere. Aletha shares her PH story and what she enjoys most about Conference.

Conference Brings the Community Together

By Karen Lovett, 2014 Conference Reporter

Wow! What a great first day! Walking down the hallways or riding on the elevator, we have had opportunities to meet many interesting people. That alone would have been enough reason for some to come to the 2014 International PH Conference. Luckily, the fun did not stop there.

The day started off with a feeling of belonging. The morning Meet-ups allowed a chance to meet others with similar situations or interests. The Newly Diagnosed and Long-Term Survivors were both popular places to hang out. As new people came and went from one group to another, the discussions flowed fairly seamlessly from one story to another. As Tiffany Gunderman shared, "People share their stories and find hope in other's experiences."

The Conference Opening was a favorite of many attendees like Jasbir James. Leaving the Grand Ballroom, people could be heard saying how much Jeannette Morrill's story touched them. Their story may be very different, but they still recognized some of the same feelings of fear and hope for the future.

Attendees were empowered as they scurried from place to place and session to session, willingly stopping to talk or answer questions. The one thing that stood out is that no one person was alone. Whether they were attending their first Conference or their eleventh, they were not the odd person in the group. They had a friend that had been there. Even better, the Conference is just getting started. Saturday is looking to be another fun-filled day.

Inspirational Song from Chloe Temtchine and her Oxygen Tank "Steve Martin"

Chloe Temtchine, a singer, songwriter living with pulmonary hypertension, sang her PH anthem "Be Brave" at PHA's 2014 Conference opening today.

PH Community Interview: Dr. Michael McGoon

Dr. McGoon talks about how he got involved with pulmonary hypertension, what he likes about working in PH, and why he participates in Conference. He was recognized at the dinner today because he is retiring this week. A 2015 research award will be named in his honor for all his years of service the the PH community and the field of pulmonary hypertension.

Conference Attendees Meet Up with Team PHenomenal Hope

As of 10 p.m. on Friday night, Team PHenomenal Hope is cycling through the mountains of West Virginia, closing in on their final destination of Annapolis, Md. Continue to track their progress on our tracking page.

Late Thursday evening, community members from PHA’s International PH Conference traveled to Bloomington, Ind., to cheer the team on as they cycled through (see the photo right).

As PHA President Rino Aldrighetti says, “Team Phenomenal Hope is inspiring the PH community. ... We talk about medicine as science and, sometimes, art. What Dr. Patty George and her team are doing takes us to a new level – inspiration. The PH community is with them every turn of the pedal, every mile of this race for our lives.”

Meet Our PH Heroes

How often is it that the entire PH community is in one room? This PHamily reunion that we have every two years is a great opportunity to recognize some of the outstanding contributions that individuals have made to our shared cause. At the dinners tonight and tomorrow we will introduce a group of remarkable members of our PHA PHamily.

Our PH heroes this year have accomplished the following feats. Read more about them in the program book on page 36.

• PH mother helped with local support group and annual fun walk
• PH mom who is a PH Email Mentor
• Created super hero capes for pediatric patients
• Has spearheaded PHA’s PH Care Centers initiative
• These women know how to throw a party, with a DJ, raffles and a candle-lighting ceremony
• Without any direct connection to PH, co-leads a support group and helped create a third group in Puerto Rico
• Raised more than $200,000 at their 2013 event
• Founded and leads the Long Beach Support Group
• Has organized an annual fun walk for the past 11 years since 2003
• Created “Just Breathe” Lung T-shirts and posters and regularly blogs about living with PH
• Event organizers who raised hundreds of thousands of dollars for research along with a strong partnership with the local Chamber of Commerce
• Has helped found three major medical programs at PHA
• Organized the largest 5K in Louisiana history that raised more than $130,000

Going All Out in the Race Toward a Cure

Jeannette Morrill

A few International PH Conferences ago Carl Hicks, who is now PHA’s Executive Vice President, gave a speech about “Hope is a Verb.” He articulated our community’s tradition of fighting back against this devastating disease in the best way we know how – each of us doing our part in big and small ways. We are a small disease state, but through the combined efforts of individuals, each racing toward a cure in their own way, we can - and have - accomplished a lot. At today’s Conference opening we saw just how powerful our collective spirit can be.

First, we saw a video from Team PHenomenal Hope, a team of four women and their crew, including Dr. Patty George from UPMC, who are on a literal race for a cure. While we enjoy Conference, they are competing in the world’s toughest cycling race, the Race Across America (RAAM), across 3,000 miles and 170,000 vertical feet of elevation from one end of the country to the other. For the past two years they have been training and raising awareness and funds for the cause. Throughout Conference we will be making announcements to Conference attendees with updates on the team and where they are in their cross-country trek. You can follow Team PH at www.PHAssociation.org/TrackTeamPH.

Next, PH patient Jeannette Morrill (pictured right) gave the Conference opening keynote about her journey, or “road trip,” with PH, which began 38 years ago when she was diagnosed in 1976. She talked about the pit stops and challenges she has had to overcome, who her pit crew is and what her hopes are for the future. In the race for a cure, Jeannette fights back as a support group leader, event organizer, advocate, speaker and Conference committee member. She also published a book about her life with PH called Living with Pulmonary Hypertension: 34 Years and Counting.

Then as a special treat, PHer Chloe Temtchine sang her PH anthem “Be Brave.” You can purchase her song on iTunes, and half the proceeds will be donated to PHA.

What a way to get this PHamily reunion officially kick started!

Meet-and-Greet: Fun for All!

By Marilyn Hanft, 2014 Conference Reporter

As a first-time Conference attendee, I wasn't sure what to expect at the Meet-and-Greet. Once I – finally – found the right room (follow the noise of bunches of people all talking at once), I was amazed to see so many people who, like me, are wearing oxygen. To no longer feel “different” was a gift I didn’t expect. Amazingly, the many wheelchairs and motorized scooters seemed to blend into the crowd.

Wandering around, taking in the exhibits, I met so many nice, friendly people; I quickly felt right at home. There was Jimmy, a caregiver for his wife, checking in ahead of me. We went our separate ways, but I caught up with him again at the buffet. I met a younger woman who was only diagnosed a couple of years ago and several who are long-term survivors.

Each story was different, yet we all share a similar path.

A group gathered around each exhibit, talking to the staff and each other, sharing the experience. At one end of the room was a long table with items being raffled off. I was particularly surprised to see a basketball autographed by Larry Bird – my all-time favorite player! Someone else won it.

And so, my evening ended – tired and looking forward to three more days.

Coming to Conference? Join the Conversation!

If you are attending Conference, please share your Conference stories, photos and videos on Twitter, Instagram or our Conference Facebook page and be sure to mark them with the #PHAIndy hashtag. To the right you can read live feeds from Twitter and Facebook to follow the conversation

We will be reporting from Conference here on the "Checkered Flag Chronicles" Conference blog. We will be including video interviews of attendees like you.

See you in Indianapolis!

ALERT: Conference Registration Closes June 6

PHA’s 2014 International PH Conference and Scientific Sessions is only 17 days away! If you haven’t registered yet – there is still time left. More than 1,200 PH community members have already registered to attend this unique educational and networking event taking place June 20-22 in Indianapolis, Ind.

In 2012, we had an overwhelming response to registration. With more than 1,500 people registered to attend our 2012 Conference, we had to close online registration and start a waiting list. Space is limited, so register now to reserve your spot!

Register Now

Online registration will be available until Friday, June 6 at 3 p.m. ET.

                 

For questions about registration, contact Registration@PHAssociation.org or call 301-565-3004 x763.