PHA News – for patients, families, caregivers, and healthcare professionals

The Right Heart

Finding Hope in the PH Community and Research Studies

Morgan Nuchols began to show signs of PH as a baby. Today the 28-year-old participates in the Pulmonary Hypertension Association’s Generation Hope Facebook Support Group for young adults. She also participates in research studies to in hopes of finding a genetic link between pulmonary hypertension and congenital diaphragmatic hernia. She also participates in research studies to in hopes of finding a genetic link between pulmonary hypertension and congenital diaphragmatic hernia.

PAH Diagnosis Leads to New Outlook on Life

A month after her diagnosis, Wendy McBride was sitting in her living room attached to a central line. Despite a five-year prognosis, she chose to live rather than die. Her life changed for the better as she learned to cope through diet, exercise and a quit-feeling-sorry-for-yourself attitude. She discovered a strength she never knew she had.

Determined To Be Defined by More Than PH

The past 23 years have shown Dawn Meador how strong she is. Since her 1998 diagnosis, she’s learned much about herself and how to appreciate little things. Dawn, of Suffolk, Virginia, shares her long-time pulmonary hypertension journey for the Pulmonary Hypertension Association’s 30th anniversary.

Familial PAH Diagnosis Prompts Need to Give Back

Kayla Naecker had classic signs of pulmonary hypertension (PH), a disease that killed her biological grandmother. But Kayla, of Benld, Illinois, didn’t suspect PH. She was in her 20s, and her grandmother’s case was thought to be associated with diet pill use. Genetic testing after a right heart catheterization confirmed familial PAH, so Kayla had her 3-year-old daughter tested, too. Kayla shares her story with the Pulmonary Hypertension Association’s Right Heart Blog for American Family Month.

Thankful for Treatment Advancements That Give Hope

Pulmonary hypertension (PH) was no stranger to Albert Wright when she was diagnosed in 2018. Her oldest sister and a niece died from it. But Alberta lives life to the fullest, taking nothing for granted. She leads the Pulmonary Hypertension Association’s Detroit Support Group and administers a PHA Facebook support group page. A full-time teacher’s aide, she shares her PH journey with PHA’s Right Heart Blog for National Family Month in June.

Living in the Moment With New Lungs

A month before Genevieve Hughes turned 50, severe shortness of breath forced her to seek emergency treatment. “I thought I was just getting older and out of shape,” says Genevieve, who later learned she had idiopathic pulmonary arterial hypertension and eventually would need a double-lung transplant. Now two years post-transplant, she’s breathing deeply and enjoying her gift of life.

PH Changed Her Life. It Taught Her to Persevere

Diane Ramirez of Lexington, North Carolina, was diagnosed with pulmonary arterial hypertension in 1987. At the time, fewer than 200 cases were known of the disease then known as primary pulmonary hypertension (PH). Diane originally shared her PH journey in the December 2020 Pathlight magazine, which launched the Pulmonary Hypertension Association’s 30th anniversary celebration.

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Featured News

Download PHA’s 2020 Annual Report

The Pulmonary Hypertension Association (PHA) is pleased to announce the publication of its 2020 Annual Report. The report reflects on PHA’s achievements during a challenging year, flanked by the emergence of the COVID-19 virus early on and emergency FDA vaccine approval as we entered 2021. The report shows the PHA’s impact on research, education, support and advocacy through stories of people with pulmonary hypertension, caregivers and health care providers.

PHPN Symposium: Don’t Miss Out

Allied health professionals: Just two weeks are left to register for the Pulmonary Hypertension Association (PHA)’s 2021 PH Professional Network (PHPN) Symposium. The event begins Sept. 30. Don’t miss outstanding continuing education sessions, including PH Through the Decades: Progress and Patient-Centered Care by Robert Frantz, M.D.; State of the Union in PH by Vallerie V. McLaughlin, M.D., and Victor F. Tapson, M.D.; and Navigating Difficult Discussions in PH by Rana Awdish, M.D., FACP, FCCP.

Amplify PHA’s Voice on Capitol Hill

Attending the Pulmonary Hypertension Professional Network Symposium? Start by participating in virtual Advocacy Day on Sept. 30. Ask Congress to advance legislation to reduce step-therapy requirements, increase PH research funding, and protect access to PH medication financial assistance. Maximize your impact by sharing your story through our email template. The Pulmonary Hypertension Association will send all messages to Congress on Advocacy Day to make a big impact.

Meet PHA’s New Advocacy Committee

The Pulmonary Hypertension Association (PHA) formed an Advocacy Committee to advise and mentor people interested in advocating for the pulmonary hypertension (PH) community. Each member of the Advocacy Committee will work with people from specific geographic regions.

Make a Difference in the Lives of Kids with PH

Eleven-year-old Tyler Garigen doesn’t let pulmonary hypertension stop him from doing the things he loves: teaching his dog Archie new tricks, learning guitar chords and playing his favorite sport, baseball. Tyler and his family are helping the Pulmonary Hypertension Association raise money to mark its 30th anniversary. Hear why they believe your donation gives hope to kids like Tyler and people of all ages with PH.

9 Tips for Sending Kids Back to School as Pandemic Evolves

COVID-19 concerns are front of mind as a second school years begins amid the pandemic. Whether to send children back to the classroom remains a difficult decision for families affected by pulmonary hypertension (PH). Discover updated advice from pediatric PH specialists on vaccination, masking and other back-to-school health issues.

Help 11-Year-Old Baseball Player Strike Out PH

When Tyler Garigen was 4 years old, he told his mom, “I can’t find my breathing.” He didn’t know another way to describe his shortness of breath. But his parents understood that he needed to see a doctor. Now 11, Tyler is the face of the Pulmonary Hypertension Association’s fall fundraising campaign. He and his parents shared his story to ensure PHA can continue its mission that began 30 years: to extend and improve the lives of people with PH.

  • John Berger

Learn About PH and Congenital Heart Disease

Join the Pulmonary Hypertension Association (PHA) at 4 p.m. Wednesday, Sept. 15 for the PHA Live “PH and Congenital Heart Disease.” John T. Berger III, M.D., will discuss congenital heart disease and review heart and blood vessel abnormalities that can occur during prenatal development and lead to pulmonary hypertension.

Register Now to Get Your Symposium Swag

Allied health professionals: It’s not too late to register for the Pulmonary Hypertension Association’s Pulmonary Hypertension Professional Network Symposium. Sign up by 11:59 p.m. EDT Wednesday, Sept. 8, to receive a gift box by mail for the Sept. 30-Oct. 3 online event. Don’t miss out on invaluable continuing education sessions, networking opportunities and Symposium swag from our sponsors.

CDC Announces New Mask, Vaccine Guidelines

The Pulmonary Hypertension Association recently updated its Frequently Asked Questions with recommendations from the Centers for Disease Control and Prevention. Find the latest recommendations on mask-wearing, protection against the Delta variant and school safety in PHA’s COVID-19 FAQ for the PH Community.

PHA Journal: How PAH Affects Organs, Obesity, Other Diseases

The latest issue of Advances in Pulmonary Hypertension addresses pulmonary arterial hypertension (PAH) as a systemic disease. “Even in its purest form, the idiopathic or hereditary PAH, the rest of the body is affected when various organs begin suffering from inadequate perfusion, initially with exertion, then even at rest,” says guest editor Ioana R. Preston, M.D. “Even in its purest form, the idiopathic or hereditary PAH, the rest of the body is affected when various organs begin suffering from inadequate perfusion, initially with exertion, then even at rest,” says guest editor Ioana R. Preston, M.D.

Virtual Support Group Meetings to Continue Through Year-End

Pulmonary Hypertension Association support group meetings will remain virtual through the end of the year. The decision was influenced by Centers for Disease Control and Prevention guidance and PHA’s Board of Trustees, Scientific Leadership Council and Support Group Leader Advisory Board.

Drive-By Lemonade Stand Raises Money for PH Research

Ellie Estes celebrated her seventh birthday by raising money for the Pulmonary Hypertension Association through a drive-by and online lemonade stand. Ellie, who has idiopathic pulmonary arterial hypertension, raised more than $7,800, and donations are still coming in.

CEO Update: How Your Research Room Participation Advances PH Care

From the early days of the Pulmonary Hypertension Association (PHA), your participation in research has led to new understanding of pulmonary hypertension (PH). In fact, studies conducted in the first Research Room led to the 1996 discovery of a gene for familial pulmonary arterial hypertension. Recently, we shared updates from studies conducted at Research Room 2018 in a PHA Live webinar. The findings really show how your contributions to research studies can improve patient care and outcomes.

Surviving Mom Shares Inspiration Behind Winning PHA 2022 Theme

The theme for the Pulmonary Hypertension Association PHA 2022 International PH Conference and Scientific Sessions is “PHacing the Future Together.” Tina Barley of  Hamilton, Alabama, submitted the winning theme, which was chosen from more than 100 ideas. Join us June 10-12, 2022, in Atlanta, for your own inspiring experience at PHA 2022.

Learn What It’s Like to Participate in PHA Registry

Join PHA at 3:30 p.m. Wednesday, Aug. 18 for “A Conversation About the PHA Registry.” Dan Grinnan, M.D., will speak with his patient, Shirl Rhodes, who is enrolled in the PHAR. Hear what it’s like to participate and how PHAR supports PH research.

Missed Our Research Room Webinar? Here’s Our Recap

A recent Pulmonary Hypertension Association (PHA) webinar unveiled learnings from six studies conducted at PHA 2108 International PH Conference and Scientific Sessions. Doctors shared updates about the studies in the July 29 PHA Live webinar “PHA Research Room Findings.” More than 200 patients and healthy subjects participated in Research Room 2018, sharing data and biological samples with 10 research teams. 

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PH Research

PHA Journal: How PAH Affects Organs, Obesity, Other Diseases

The latest issue of Advances in Pulmonary Hypertension addresses pulmonary arterial hypertension (PAH) as a systemic disease. “Even in its purest form, the idiopathic or hereditary PAH, the rest of the body is affected when various organs begin suffering from inadequate perfusion, initially with exertion, then even at rest,” says guest editor Ioana R. Preston, M.D. “Even in its purest form, the idiopathic or hereditary PAH, the rest of the body is affected when various organs begin suffering from inadequate perfusion, initially with exertion, then even at rest,” says guest editor Ioana R. Preston, M.D.

Missed Our Research Room Webinar? Here’s Our Recap

A recent Pulmonary Hypertension Association (PHA) webinar unveiled learnings from six studies conducted at PHA 2108 International PH Conference and Scientific Sessions. Doctors shared updates about the studies in the July 29 PHA Live webinar “PHA Research Room Findings.” More than 200 patients and healthy subjects participated in Research Room 2018, sharing data and biological samples with 10 research teams. 

Learn Findings from the 2018 PHA Research Room

Join the Pulmonary Hypertension Association (PHA) at 3:30 p.m. EST Thursday, July 29 for “PHA Research Room Findings.” Hear from scientists and clinicians about Research Room study findings from the 2018 PHA International PH Conference and Scientific Sessions.

Study: PH Support Groups Are Good for Your Health

Your support group participation might improve your life more than you realize. A recently published study shows that support groups improve meaningful health-related outcomes, such as self-care, pulmonary hypertension symptom management, medication adherence and understanding related medical procedures.

FDA Approves First Drug for Group 3 PH

The FDA recently approved Tyvaso (treprostinil) Inhalation Solution to improve exercise ability for people who have PH associated with interstitial lung disease. Manufactured by United Therapeutics, Tyvaso is the first FDA-approved treatment for Group 3 PH.

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