The Pulmonary Hypertension Association (PHA) would not be able to achieve its work without the dedication and excellence of the entire PH community. The individuals recognized during a June 30 awards ceremony at PHA’s 2018 International PH Conference and Scientific Sessions have exemplified dedication and service to the community and the association. They have raised awareness so that the voice and face of the pulmonary hypertension (PH) community is heard through their participation in advocacy efforts and fundraising events, promotion of quality patient care, and advancement of PH research.
Earlier this year, PHA solicited nominations from patients, family, friends and medical professionals for these awards. The awards committee had the honor of reading all nominations, and was overwhelmed by the amount of good work happening across the PH community. While 10 special people were honored, PHA honors all members of the community for the contributions they are making that help change our lives for the better.
PHA Philanthropy Award: James “Jim” Ryan
Mr. James “Jim” Ryan founded Market Finders Insurance Corporation, headquartered in Louisville, in 1972. An insurance wholesaler specializing in surplus lines and hard-to-place risks, the company also has two branch offices in Franklin, OH, and Greenville, SC. Having worked in the industry for five decades, Mr. Ryan continues to serve as chairman of the board of directors. Instrumentally active in the insurance industry, he served as president of the American Association of Managing General Agents, president of the Kentucky Surplus Lines Association, president of Kentucky Lloyd’s Agent Association, and was a member of the Board of Directors of the National Association of Professional Surplus Lines Officers. In his retirement, the majority of Mr. Ryan’s time centers around involvement with six charities.
Outstanding Physician: Todd Bull, M.D., director, Pulmonary Vascular Disease Program and director, Center for Lungs and Breathing, University of Colorado School of Medicine
Todd Bull, M.D., graduated from the University of Colorado (CU) School of Medicine in 1994, and completed his residency at University of Texas Southwestern Medical Center in Dallas. He returned to CU to complete a Fellowship in Pulmonary and Critical Care Medicine, where he had an opportunity to work with giants in the PH field. Dr. Bull developed an interest in Pulmonary Vascular Disease and Right Ventricular Function during his residency and knew Colorado, with this world class group of clinicians and researchers, was the place to really increase his understanding and ability to impact this disease.
Outstanding PH Citizen (patient): Janice “Jan” Janus, adult with PH
Janice “Jan” Janus is a fifth generation, six-year survivor of hereditary pulmonary arterial hypertension. After her diagnosis in 2012, she created a Facebook support group, helping patients and caregivers live with this disease. She enjoys helping the PH community by creating awareness t-shirts and volunteering with the PH5K Run hosted in Pittsburgh every April. When the co-pay assistance crisis began, Jan took action by compiling lists of nonprofit organizations and drug manufacturers to help the community find new ways to pay for their medications. She also helped PHA compile a video to spread across the PH community to discuss how to get co-pay assistance. She is determined to bring awareness by advocating as much as she can.
Outstanding PHA Support Group Leader Carol Bowling, adult with PH, PHA PHriend, support group leader
Almost nine years ago, Carol Bowling heard the words, “you have pulmonary hypertension.” Ten months later, she learned that she had cancer, non-Hodgkin’s lymphoma, which she said was “quite a blow in one year.” After learning how to survive her diagnoses, Carol learned to accept them, and finally to live her life with them. She says, “It was then that I decided to help others on their PH journey. I became a support group co-leader in Sacramento, California” In addition, Carol facilitates the National Patient Support Group monthly call. On this call, she works with many newly diagnosed or patients who can’t get to a meeting.
Outstanding Caregiver: Jane Northrop, parent of a child with PH
Jane Northrop has been a caregiver for her daughter, Nicole, since January 2010, when diagnosed with PH. She continues to take care of the administrative aspects of Nicole’s care. Jane has done her best to be an advocate for Nicole and for the PH community. She is a support line volunteer, a peer mentor through United Therapeutics, a co-support group leader for the Orlando, Fla., PH support group and helps on the Specialty Pharmacy Board and Pediatric Task Force Board.
Outstanding PH Citizen (patient under age 30): Riley Wiegele, child with PH
Riley is a super energetic and very caring 7-year-old child with PH. She was diagnosed in 2014 and has been on triple therapy since then. Over the years, Riley has seen many of her friends go through so much and she wants to give back. For her birthday and Christmas this past year, she only asked for money so she could buy presents for children in the hospital instead of getting gifts herself. She also was able to raise money from friends and family to contribute to this effort. Riley enjoys giving back so much that she wants to start a nonprofit someday to help PH kids buy dry suits to enable them to swim, and to send happy packages to her friends in the hospital. She has big plans to help as many people as she can!
Julie Hendry Memorial Scholarship Award (non-patient volunteer): Jill Rodriguez Landin, patient advocate
Jill Rodriguez Landin was misdiagnosed with PH in 2014 (she later was correctly diagnosed with COPD and asthma). When diagnosed with PH, she joined support groups in Puerto Rico and learned PH was not covered by Puerto Rico’s government health plan. However, working with Dr. Hector Stella and other patients, Jill facilitated the process to make covering PH a law in Puerto Rico. She also has participated in a variety of other legal projects related to PH, and cares very much about the people living with the disease. Jill raises money to increase media attention and fight for the rights of PH patients in Puerto Rico.
Julie Hendry Memorial Scholarship Award (non-patient volunteer): Lisa Wheeler, retired study coordinator, Pulmonary Hypertension Clinical & Research Team, Vanderbilt University Medical Center
Lisa Wheeler began her journey working in the PH world in August 1994, just missing the first patient conference. James Loyd, M.D., recruited her as study coordinator for a National Institutes of Health grant that was searching for a gene(s) causing PH in families. Helped by the team at PHA – then called United Patients Association for Pulmonary Hypertension (UPAPH) – Jill’s job was to find and reach out to families affected by PH and ask for their help with this effort. At the time, patient educational materials were nearly non-existent so Jill referred patients to UPAPH/PHA for help and understanding. She retired from research in December 2017.
Rino Aldrighetti Leadership Award: Brian Hanna, M.D., C.M., Ph.D., Pulmonary Hypertension Division of Cardiology, The Children’s Hospital of Philadelphia
Brian Hanna, M.D., C.M., Ph.D., is the founding physician member of Heart Camp at Echo Hill Outdoor School. Heart Camp is a week-long, overnight summer camp for children who have PH, have had a lung transplant or have had a heart transplant. Heart Camp is special because it gives these extraordinary children the opportunity to experience summer camp in a way they would not otherwise be able to, without their parents and with children who know what it is like to have a chronic, life limiting illness. Dr. Hanna’s own “camper at heart” spirit and willingness and encouragement to let these children push their boundaries and try new things has allowed the camp to provide a special, life-changing week to more than 100 children with PH since 2007.
Outstanding Allied Health Professional: Martha Kingman, D.N.P., FNP-C, University of Texas Southwestern Medical Center (UTSW) at Dallas
Martha Kingman has been a Nurse Practitioner in the PH center at UTSW Medical Center at Dallas for 18 years. She is a member of the Pulmonary Hypertension Professional Network (PHPN) Executive Board and is chair of the PHPN Symposium planning committee. Martha’s doctoral project involved the publication of safety guidelines for administering intravenous prostacyclins in the hospital setting. She has written 18 PH publications, most recently involving side effect management of prostacyclin medications. Martha serves on the steering committee for IMPACT PH, a CME program, is a member of PH advisory boards and has spoken nationally and internationally about PH.