Sunday, June 22, 2014

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!



Saturday, June 21, 2014

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.

Friday, June 20, 2014

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.

Wednesday, June 18, 2014

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!

Tuesday, June 3, 2014

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!


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.


Tuesday, May 27, 2014

ALERT: Conference Program Book Available Online


Our Conference program book is still printing – but we wanted you to get a sneak peek now! A PDF copy of the program book is now available to view and download on our website.


You will receive a copy of the program book in your attendee bag given out when you check-in at Conference registration in a few weeks!

This program book will be your guide to the weekend, providing session times, session names, speakers, maps of the hotel and more.

Friday, May 16, 2014

Mix and Mingle at Conference

PHA’s 2014 International PH Conference and Scientific Sessions offers many opportunities to connect socially with others just like you! From a Meet-and-Greet and Meet-ups to Support groups and more, there is plenty of chances to network among educational sessions.  Check out a few targeted networking events that will take place during Conference:

Parents’ Mixer
Friday, June 20 at 6:15 p.m.
Remember how nice it was to hire a babysitter and go out with your friends? We didn’t think so. As a refresher, join other parents in the Parents' Mixer at Conference and unwind as you enjoy this adult-only event.

Generation Hope After Dark
Friday, June 20 at 8:30 p.m.
Join your Generation Hope peers (ages 18-40) for conversation, fun and cocktails. You will have the opportunity to unwind with the new generation ready to right PH in a casual setting after a day of educational sessions!

NEW! Long-Term Survivors Mixer
Friday, June 20 at 8:30 p.m.
Mix and mingle with others who have been living with PH for the long-haul over cocktails.

Wednesday, May 14, 2014

ALERT: Last Chance to Submit a Note of Thanks

Many people are affected when your life or the life of your loved one has been touched by PH. Acknowledge those who’ve made a difference in your life with a Note of Thanks and Remembrance in PHA's 2014 Conference slideshow. Even if you aren’t attending Conference, you can make your appreciation or memories known to the more than 1,500 attendees expected to attend.

Each note is $25 (50 word max.) and all proceeds benefit the Conference Scholarship Fund.
 
Act now, the deadline to submit a note is May 15 by midnight!

Submit a Note of Thanks and Remembrance

Tuesday, May 6, 2014

Special Invitation: PHA Fashion Show

Who: YOU!
 
When: Saturday, June 22, 4:30 p.m. – 5:30 p.m.
 
Where: Indianapolis, Ind. – PHA’s 2014 International PH Conference and Scientific Sessions

You are invited to attend the PHA Fashion Show – where patients of all ages will walk the runway showing off unique ways of hiding or flaunting their pump, oxygen and more. Make sure you grab a seat to see your PH friends proudly strut the runway. Who knows – the next Tyra Banks, Heidi Klum or Tyson Beckford may be among the mix!

The PHA Fashion Show is an event that many attendees look forward to at each International PH Conference. The PHA Fashion Show tradition began at the 2002 Conference as a workshop demonstrating how to hide pumps, tubes and other medical devices using handbags, scarfs and other fashionable items. That first workshop was presented to a packed room, with standing room only – so it was obvious that there was a need for the information! Soon after, the workshop was expanded into a full fashion show, led by Rynna Ollivier, a PH patient and former model. The full fashion show format continues today, and draws a tremendous crowd at each Conference!

Want to know what to expect at the PHA Fashion Show? Check out this special highlight video from our 2010 Conference:



Posted by:

Kristie Link, Publications Intern, PHA
Suzanne Flood
, Marketing & Communications Manager, PHA

Tuesday, April 29, 2014

Two Community Members Honored with Julie Hendry Memorial Award

Julie Paton Hendry, daughter of PHA founding members Pat and Jerry Paton, was the first full-time, non-patient PHA volunteer. Every two years, she looked forward to PHA's Conference as an opportunity to meet the PH patients and families she talked with by telephone and email. Sadly, Julie passed away in 1998. Her family established the Julie Hendry Memorial Scholarship Award in her memory to help a non-patient volunteer attend Conference. This award is given to two PHA members who actively support PHA.

This year, Mary Felkel and Anaelis Padilla are the proud recipients of the Julie Hendry Memorial Award. Both women have been extraordinary members of the PH community.
Mary Felkel (left) and Anaelis Padilla (right)
We were able to interview these two before they head off to Conference. Read on to hear what they had to say.

Kristie [PHA Publications Intern]: What has been your experience with Conference? What are you most excited for?
Mary: I have attended all 10 Conferences, so I’ve had the experience of watching it grow into what it is today and yet maintain the essence of the first one. It’s a time to network with patients, caregivers, family members, doctors, nurses, researchers, and others who are involved in dealing with this disease. What I look forward to the most is reconnecting with old friends, meeting new ones, and finding out the advances that have been made towards finding a cure.
Anaelis:The first time I had the opportunity to attend a PHA Conference was in 2010. I went to California with the expectation of learning new things, meeting other PHers and to gather information to share with the community. What I received in return was a better understanding of PH, meeting new people and a big opportunity of changing other’s life just by sharing the information received at Conference. In 2014, I am excited the meet other Support Group Leaders, new friends, share ideas and exchange memories of my journey as part of the Caparra Wellness Center PH Support Group. I am looking forward on gathering a lot of information for those patients, family, caregivers and friends who can’t be at Conference.

K: What have you done for the PH community? How are you involved?
M: Over the years I have helped my daughter, Sally Maddox (a 24 year PH survivor), with support group meetings and her annual Walk For a Cure, which has raised more than $100,000 for research and patient support. At Conference I’ve donated blood for research, facilitated support groups for parents of adult patients, served as a room host and worked in the PHA Store. I’ve also made monetary donations and travel to play in two golf tournaments that raise funds for PH.
A:I have been Co-Leader of the Caparra Wellness Center PH Support group since it was founded almost five years ago. We create cards, distribute PH information at health fairs, malls, schools, churches and workplaces. I have planned reunions, met with new patients and families, gathered articles and stories to share with caregivers and general public about pulmonary hypertension.

K: Why did you decide to get involved with PHA?
M: I became involved with PHA because my daughter is a patient. PHA has been a source of support for our family since we first learned of its existence in 1991.
A: I decided to get involved with PHA because I met a couple of patients at my pulmonologist’s office. I am not a PH patient but I was hospitalized eight times in less than a year for my asthma and bronchitis. Because of this, sometimes I had my visits at the same time the PHers did and we became friends. I learned about PH and decided I will get involved in any way possible to spread the word about the condition. I also wanted to pay back the care and dedication of doctor Hector J. I am very thankful for all he has done and how involved he is with all of his patients. I know that PH is very important to him, so I decided to be part of a support group. From the beginning, this journey has been a big learning experience that will never end.

K: How do you feel about receiving this award?
M: I am honored to receive this award. Julie’s family has been an inspiration to me over the years for all they’ve done to help find a cure, while at the same time giving support to all those touched by PH.
A: I cannot believe that I am receiving the Julie Hendry Award. I am so surprised because I feel I do so little when others people say I do so much. I am very proud and honored to receive this recognition.Some members of our support group told me that I should apply for the award. Personally, I felt what I have done wasn’t even near to the point of being recognized. Then when Julia Friederich and Joshua Griffis of PHA visited Puerto Rico, Julia insisted I apply because I do a lot of things for the PH community. "You are what that award is all about," she said.

K: What is your most memorable moment while working with the PH community?
M: My most memorable moment was sitting at my daughter’s bedside in an ICU room as she Skyped with people attending the 2011 GA Fun Walk. We have an awesome support system of family and friends who hosted the event she worked so hard to plan. They proved this by doing it again in 2013 when Sally had to be admitted to ICU on the day of the walk.
A: If I have to choose one specific moment I had while working with PH it has to be the smile of one special guy that unfortunately lost his battle to PH. He went to one of our meetings and I told him “just do things differently, don’t give up on doing things you love." I didn’t know Julie Paton Hendry, but from my experiences I know how she must have felt while working with the PH community.

Posted by:
Kristie Link
Publications Intern, PHA

Thursday, April 24, 2014

Throwback: PH Patient, Kirsten Larson, Vlogs from Orlando in 2012

Hear it best from a Conference veteran. In this 2012 video blog, PH patient, Kirsten Larson, talks about how Conference has evolved each time through the seven times she’s been. She even met new PHriends and talked with them into the wee hours of the next morning!

"Each year it [Conference] gets better and better because we keep growing more and more and Conference has more than doubled since I started coming..." Kirsten Larson


Tuesday, April 22, 2014

Sights and Attractions of Indianapolis

As you are registering to attend PHA’s 2014 International PH Conference in Indianapolis, you are probably wondering what makes Indy so special. Indianapolis is a thriving city and beautiful place to plan a family vacation or a singles retreat. We all know that Indianapolis is home to the NFL Indianapolis Colts, but the city has a variety of attractions for everyone! Don’t believe us? We spoke to the local Indianapolis PH Support Group members and asked for their top picks of attractions in the area.

Here’s what they had to say:

“I’m in Indy, and I highly recommend the museums: Eiteljorg Museum of American Indians and Western Art, Museum of Art, Conner Prairie Interactive History Park. And our Children's Museum is known as the best in the country. There’s also a great variety of arts and entertainment downtown and around Indy, too, for the young adult crowd.”

Natalie Tolley, PH Parent, Indianapolis, Ind.

“White River State Park is in downtown Indy and just across the street from the [Conference hotel] JW Marriott Indianapolis. The park has many acres with a beautiful zoo, museums, five memorials, world-renowned Imax theater, a beautiful canal with paddle boats, gondolas, bicycles, segway tours, fountains, and free summer concerts! We are also home to Circle Center Mall, a three-floor Simon mall with many great restaurants and stores. And all of this is within walking distance of the Marriott.”

Cindy Battiato, PH Caregiver, Indianapolis, Ind.

Other Sites to consider:
  • Indianapolis Motor Speedway
  • Indianapolis Zoo
  • NCAA Hall of Fame
  • Dallara IndyCar Factory
For more tips on planning your visit to Indianapolis this summer, visit our Conference website.


Posted by:

Brianah Lewis
Web Services Intern, PHA