PHA News
For patients, families, caregivers and health care professionals
The Right Heart
Content Creator Exceeds Expectations to Thrive at 30
Amy Earnest was diagnosed with pulmonary arterial hypertension shortly after she was born in 1994. Since then, she’s learned the importance of choosing the right doctor and advocating for herself. Earnest, of East Moline, Illinois, shares her story to spread awareness and connect with others. ‘I know I’m here for a purpose and want to live every day to the fullest.’
Preparing for the Unpredictable
RoxAnna Blackwell of Calhoun Falls, South Carolina, is an educator and mother of one son. Blackwell enjoys spending time with family and friends, good food and traveling. She originally shared her Hurricane Helene experience in Pathlight, PHA’s quarterly member magazine.
40-Year Thriver Finds Joy While Navigating Chronic Conditions
Kim Everett has lived with lupus for over 40 years and pulmonary arterial hypertension for over 20. For Lupus Awareness Month, she shares her diagnosis journey and advice for navigating life with chronic illnesses.
Support Group Leader Finds Silver Linings
Rachel Gabbert Roberts was 30 when she was diagnosed with idiopathic pulmonary arterial hypertension in 2010. Since then, she has learned to listen to her body and have a positive outlook on life.
Volunteer Takes on International Care Disparities
As the moderator of a PHA Facebook group, Janessa Curnow, 38, receives requests to join the group from people all over the world. For World Pulmonary Hypertension Day on May 5, Curnow shares what she’s learned from the international PH community. Curnow leads the PHA Young Adult Support Group and previously led the PHA Grand Rapids Support Group in Michigan.
Piper With PH Marches Onward
Carole Doody's passion, playing the bagpipes, saved her life. When she no longer could play the right tones or march, Doody knew something was wrong. Fifteen years after her PH diagnosis, the retired speech-language pathologist volunteers for PHA. She shares her story in honor of National Volunteer Week, which wraps up April 26.
Transplant Recipient Aids Research Through Own Gift
Lauri Stanfield of Tomball, Texas, received the gift of life in 2015 through a double lung transplant – and gave life by donating parts of her lungs for research. Stanfield, who works in the oil industry, likes to try new things and is weighing whether to learn pickle ball.
San Antonio Support Group Leader Finds Community Through PHA
Over the past 24 years, Sophia Esteves of San Antonio has found strength and community through the Pulmonary Hypertension Association. Last year, PHA named Esteves its 2024 Outstanding Support Group Leader. Esteves shares her story as the face of PHA’s spring fundraising campaign and in the upcoming issue of Pathlight magazine.
Featured News
Content Creator Exceeds Expectations to Thrive at 30
Amy Earnest was diagnosed with pulmonary arterial hypertension shortly after she was born in 1994. Since then, she’s learned the importance of choosing the right doctor and advocating for herself. Earnest, of East Moline, Illinois, shares her story to spread awareness and connect with others. ‘I know I’m here for a purpose and want to live every day to the fullest.’
Preparing for the Unpredictable
RoxAnna Blackwell of Calhoun Falls, South Carolina, is an educator and mother of one son. Blackwell enjoys spending time with family and friends, good food and traveling. She originally shared her Hurricane Helene experience in Pathlight, PHA’s quarterly member magazine.
PHA Leads Advocacy on In-Flight Portable Oxygen Concentrators
The Pulmonary Hypertension Association is leading a multi-organization effort to make sure people can fly with supplemental oxygen. PHA has requested meetings with the Federal Aviation Administration and Department of Transportation and continues to meet with members of Congress.
Symposium to Feature Session on Foundation of Successful Care Team
Health care professionals: As you plan for PHA’s PH Professional Network Symposium, consider attending a featured session on multidisciplinary care teams. Speakers from four PHA-accredited PH Care Centers will discuss how they manage multidisciplinary teams, address challenges and support growth and development of their teams. The PH Professional Network Symposium runs from Sept. 18 through 20, in Seattle.
Spring O2breathe Walks Raise More Than $130K
Thanks to the support of the pulmonary hypertension community, six PHA O2breathe walks raised more than $130,000 to support PHA’s programs and services.
‘Medicaid is a Lifeline for Many of my Patients’
The Medicaid program is under threat in Congress. The budget bill could end health care benefits for nearly 11 million people. The bill also includes burdensome requirements that could restrict Medicaid eligibility. “[Medicaid] makes the difference between patients having access to care or going without,” says Kassandra Olgers, a PHA advocate and physician assistant at West Virginia University.
Share Your Ideas for the PHA 2026 Conference Theme
Help PHA come up with a theme for PHA 2026 International PH Conference and Scientific Sessions. Your idea could become the official conference theme. Enter by June 25 for a chance to win two free conference registrations, a $50 Amazon gift card, PHA swag and unlimited bragging rights.
Live in the Denver Area? Join Us for 2 Events in 1 Weekend
If you live in the Denver area, mark your calendars for a Pulmonary Hypertension Association weekend of education, empowerment and support on Saturday, Aug. 23, and Sunday, Aug. 24.
PHPN Symposium Registration Opens June 25
Health care professionals: Registration opens Wednesday, June 25, for the PH Professional Network Symposium. PHA’s PHPN Symposium will bring more than 500 health care professionals to Seattle Sept. 18-20.
PHA’s 6-Minute Challenge Raises $7K
More than 100 people participated in PHA’s first virtual fundraiser, the 6-Minute Challenge. Participants committed to at least six minutes of activity each day in May, from walking to chair yoga. Participants chose activities that best suited their needs.
PHA at ATS: Advancing Innovation, Collaboration, Patient-Focused Care
Matt Granato recently represented the Pulmonary Hypertension Association at the American Thoracic Society International Conference. Granato described the conference as a powerful reminder of the momentum PHA is building in PH research, education and patient advocacy.
Fetal Toxicity Remains Risk for Some PH Therapies
The Food and Drug Administration recently eliminated the fetal toxicity risk-mitigation requirement for three pulmonary hypertension medications. FDA removed the Risk Evaluation and Mitigation Strategies requirement for ambrisentan, macitentan and the macitentan-tadalafil combination tablet, but not bosentan.
PHA Names Pediatric Grant Recipients
Ripla Arora of Michigan State University and Katelyn Enzer of University of Colorado are the latest recipients of PHA’s Pediatric PH Research Grant. Arora explores how embryos interact with the uterus during early development and how lungs develop in utero. Enzer’s researches innovative techniques to assess pulmonary function in preterm infants.
Patient Stories Show PH Impact Around the World
The Pulmonary Hypertension Association joined the global pulmonary hypertension May 5 by sharing patient stories for World PH Day. The theme, “Sometimes It’s Pulmonary Hypertension,” highlighted patients’ anxiety, uncertainty and health consequences before finally learning they have PH.
PHA Accredits 100th PH Care Center
Children’s Mercy Hospital in Kansas City, Missouri, became the 100th PHA-accredited Pulmonary Hypertension Care Center in April. Children’s Mercy is one of 3 pediatric Regional Clinical Programs in PHA’s care center network. “We trust accreditation will give patients and families confidence in the care we provide,” said Kate Carp, PH clinical nurse coordinator at Children’s Mercy.
Hill Day Visits Pay Off With Immediate ‘Win’
After PHA advocates visited members of Congress for World PH Day, Rep. Cleo Fields (D-La.) stepped up right away. Fields signed on as cosponsor of Supplemental Oxygen Access Reform Act the day after our in-person advocacy event on Capital Hill.
40-Year Thriver Finds Joy While Navigating Chronic Conditions
Kim Everett has lived with lupus for over 40 years and pulmonary arterial hypertension for over 20. For Lupus Awareness Month, she shares her diagnosis journey and advice for navigating life with chronic illnesses.
5 ATS Abstracts Feature PHA Registry Data
Research based on PHA Registry data appeared in five abstracts presented at the American Thoracic Society’s annual conference, May 18-21 in San Francisco.
Support Group Leader Finds Silver Linings
Rachel Gabbert Roberts was 30 when she was diagnosed with idiopathic pulmonary arterial hypertension in 2010. Since then, she has learned to listen to her body and have a positive outlook on life.
Help Improve the Lives of People With PH
Want to do your part to support the PH community? Anyone can be an advocate in as few as five minutes. PHA makes it quick and easy to connect with your members of Congress.
PHANews.org, a publication of the Pulmonary Hypertension Association (PHA), is the trusted source of up-to-date news, community events listings and lifesaving information about pulmonary hypertension for patients, families and caregivers, healthcare professionals and supporters.
PHA’s Weekend in Denver to Raise Pulmonary Hypertension Awareness Aug. 23-24
The Pulmonary Hypertension Association visits Denver, Aug. 23-24, to raise awareness about pulmonary hypertension and support the local PH community through education, connection and support.
Seattle to Host 2025 Pulmonary Hypertension Professional Network Symposium September 18-20
Leading pulmonary hypertension experts head to Seattle for the 2025 PHPN Symposium, Sept. 18–20, focused on advancing PH care through education, research, advocacy and collaboration.
Pulmonary Hypertension Association Launches Certificate Program for Advanced Practice Providers and Allied Health Professionals
The Pulmonary Hypertension Association has launched a new certificate program for advanced practice providers and allied health professionals. The Pulmonary Hypertension Certificate program is designed to build specialized knowledge in the diagnosis, treatment and management of pulmonary hypertension.
A decade of impact: PHAR marks 10 years of PH advancing PH research
This year marks the 10th anniversary of the Pulmonary Hypertension Association Registry, a critical resource that now includes data from more than 3,500 patients. Over the past decade, PHAR has empowered health care providers and researchers to drive evidence-based practice, improve patient care and fuel innovations in treatment.
Researchers: Apply for PHA Grants
The Pulmonary Hypertension Association encourages PH professionals to apply for two research grants: the Health Disparities in PH Research and Innovation in PH Research awards. The Health Disparities in PH Research grant supports projects that addresses early diagnosis, education and improving clinical outcomes and treatments for people with PH who may be affected by health inequities.
Pandemic Didn’t Impede PAH Patients Enrolled in PHA Registry
A new-peer reviewed research paper showed that people with pulmonary arterial hypertension enrolled in the PHA Registry didn’t experience medication delays, increased emergency room visits or more hospital stays. The paper, which appeared in the April 18 issue of the Pulmonary Circulation Journal, is the 15th published paper based on PHA Registry data.
PHA Names 2022 PHA Pediatric Research Awardee
The Pulmonary Hypertension Association (PHA) is pleased to announce Paul Crister, M.D., Ph.D., as the recipient of the 2022 Pediatric PH Research Award. The research award supports research that could have a great impact toward advancing the field of PH pediatrics.
How to Manage Staff Changes for PHAR
Your PHA Registry (PHAR) team may change over time with new staff coming onboard and others rotating off. Here are three tips for a smooth transition.
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