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.

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.

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.

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.

‘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.

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.

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.

  • Ripla Arora, PhD

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.

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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.

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.

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