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

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

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

Throwback: PHA Roving Reporter Takes on 2012 Conference

Food. Fun. Friends. That sums up the exciting Patient and Family Meet-and-Greet from our 2012 Conference. PHA Roving Reporter, Nicole Northrop, took to our 2012 Conference Blog to describe the scene filled with tons to do and see!

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.

Read Nicole's full blog post from our 2012 Conference

PHCC: Raising the Quality of Care for All PH Patients

At PHA’s 2014 International PH Conference and Scientific Sessions in Indianapolis this June, patients, caregivers and medical professionals will have opportunities to learn and share additional information about the PHCC initiative. 

 

PHA is pleased to announce a new chapter in the diagnosis and management of pulmonary hypertension: the PHA-Accredited Pulmonary Hypertension Care Centers (PHCC) initiative. Since 2011, the PHA Scientific Leadership Council (SLC) and a subcommittee, led by Dr. Murali Chakinala and including more than 40 physicians, non-physician clinicians, patients and caregivers, have sought to develop a program to identify medical centers with special expertise in treating PH. The primary goal of this program is to raise the overall quality of care and outcomes in patients with this life-threatening disease. 

At PHA, we frequently receive inquiries from cardiologists and pulmonologists who are interested in treating PH but are unsure how to organize a robust PH program correctly and efficiently. We now have a resource to provide them! In the near future, medical centers treating pulmonary hypertension will be invited to apply to become a PHA-Accredited PH Care Center. Successful applicants will be placed into one of two levels of accreditation based on the depth of all resources available to the PH program. These levels will be defined as: 

• PHA-Accredited Center of Comprehensive Care (CCC): a highly organized, full-time PH center that proficiently evaluates PH patients based on published evidence-based guidelines and provides expert treatment of patients with all of the FDA-approved therapies. CCCs also make important contributions to PH research and education
• PHA-Accredited Regional Clinical Program (RCP): a regional PH Center that proficiently evaluates PH patients and provides expert treatment with all non-infused therapies. An RCP must collaborate with its regional CCCs by referring patients who may benefit from opportunities unavailable at the RCP, including the initiation of infused therapies and participation in clinical trials.

What Does the PHCC Initiative Mean to Me?

PHCC is meant to be another tool in your fight against PH. When fully implemented, PHCC will be a network of expert clinicians who you can either see directly or who your medical team can contact when optimizing your care. This includes a cohesive medical team, verification that diagnoses are made correctly and appropriate treatment started, as well as explicit institutional support for the pulmonary hypertension program.

View the full criteria list for Centers of Comprehensive Care and Regional Clinical Programs. Applications are expected to open and full site visits to begin in the second half of 2014, and we anticipate that it will be several years before all qualified and interested sites have an opportunity to be processed for accreditation.

Where Can I Go for More Information? 

• Online: The PHCC website is regularly updated with more information on the initiative and what it means for you.
• An upcoming webinar: Drs. Michael McGoon, Erika Berman-Rosenzweig and Murali Chakinala will lead a webinar on April 30, 2014, to discuss the PHCC initiative. There will be time for Q&A at the end. Register for this webinar now. If you are unable to join, a recording of the webinar will be placed in PHA Classroom. 
• PHA's 2014 International PH Conference: During Conference in Indianapolis this June, we will have even more opportunities to share additional information about the PHCC. Register for Conference now.

Written by:
Michael Gray, Director of Medical Services, PHA

Olivia Onyeador, PHCC Program Manager, PHA

Posted by:
Kristie Link, Publications Intern, PHA