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.