PHA News

For patients, families, caregivers and health care professionals

The Right Heart

Texas Third Graders Rally for Classmate With PH

Hughes Elementary School showed its true colors for World PH Day when students and staff dressed in purple to support third-grader Isla Grey, who has PH. Isla’s class also raised $660 in quarters in April for pulmonary hypertension research. Isla’s mom Jennifer Morrow shares their story in the Right Heart Blog.

Decreasing Lung Pressure Gives Hope a Year After Diagnosis

Uraiwan Campbell went to urgent care for what she thought was an infected scratch on her leg. But after several days in the hospital and many tests, she learned her swollen leg was related to pulmonary hypertension. A recent heart catheterization showed her lung pressure has declined, buoying her spirits.

Pump Life is Tough. But Family, Friends and Hot Sauce Help Patient Stay Positive

Chloe Merritt, 22, is still getting used to a low-sodium diet, lack of energy and the challenges of a subcutaneous pump after her September 2022 diagnosis. But the life-changing experience has brought her closer than ever to family and friends. And it led her to a new favorite food. Chloe shares her positive outlook in the Right Heart Blog.

Familial PAH Affects 4 Generations

Whitney Whited was 10 when her father died of pulmonary arterial hypertension (PAH) complications. Recently, she learned about the BMPR2 gene and sought genetic testing for her 11-year-old daughter. Whitney, 34, who doesn’t have PAH, shared her family’s story in the winter 2022 issue of Pathlight, the Pulmonary Hypertension Association’s member magazine.

Retiree Stays Active as She Adapts to CTEPH

Joyce Sandberg of Port St. Lucie, Florida, noticed shortness of breath nine years ago while biking. A few years later, she developed blood clots and chronic thromboembolic pulmonary hypertension. But she doesn’t let her conditions stop her from enjoying life, taking cruises and attending classic car shows with her husband.

CTEPH Patient Finds Community Through PHA Facebook Group

Karly Loree, 30, felt isolated after her chronic thromboembolic pulmonary hypertension (CTEPH) diagnosis. But when she discovered a Pulmonary Hypertension Association support group for people with CTEPH, she found support, hope and community. As she awaits surgery this month, she shares her story for the Pulmonary Hypertension Association’s end-of-year fundraising campaign.

How a New Jersey Support Group Leader Honors Her Late Son

Bonnie Patricelli memorializes her son Ryan Juntti through her volunteer work for the Pulmonary Hypertension Association (PHA). She and Ryan revived PHA’s South Jersey Support Group in 2008, and she continues to co-lead the group since Ryan’s 2015 death. Bonnie’s story appears in the fall issue of Pathlight, PHA’s quarterly member magazine.

Join the Liu Family in Supporting PHA

The Liu family was vacationing in the Netherlands in 2012 when their 2-year-old daughter, Esther, had a heart attack. Two days later, she was diagnosed with pulmonary arterial hypertension, with an unknown cause. Since then, she has received a double lung transplant and travels all over the world with her mother Michelle, a physician and Pulmonary Hypertension Association (PHA) board member, to share their PH journey. Dr. Liu, shares that story as part of PHA’s fall fundraising campaign.

Featured News

Advocacy Pays Off Now That Full Senate Will Consider Safe Step Act

Thanks to Pulmonary Hypertension Association (PHA) advocacy efforts, the Safe Step Act moves to the full Senate floor for the first time. “This is a huge step in the legislative process. While there is more work before this bill becomes law, PHA celebrates this milestone achievement,” says PHA President and CEO Matt Granato.

PHA Participates in World Heart Federation Forum

Pulmonary Hypertension Association President and CEO Matt Granato recently participated in the World Heart Federation forum on rare cardiovascular diseases. Matt represented PHA and the pulmonary hypertension community at the event in Geneva, Switzerland, with Lauren Janzen, a patient and advocate from Wisconsin.

San Diego Workshop Provides Opportunities To Connect, Learn and Share

More than over 80 people attended the Pulmonary Hypertension Association’s recent education workshop. PHA Connects: PH Community Workshop addressed medication side effects, chronic thromboembolic pulmonary hypertension and blood abnormalities associated with PH, among other topics. The free, daylong event, formerly known as PHA On the Road, also included support group meetings.

Do You Know Your State’s Process for Medicaid Eligibility?

Join the Pulmonary Hypertension Association (PHA) for new webinar about Medicaid eligibility. Learn to navigate changes related to the end of the COVID-19 public health emergency. Find out how states are reviewing eligibility and disenrolling people who no longer qualify for Medicaid or the Children’s Health Insurance Program’s continuous coverage provisions. Join us at 2 p.m. EDT Wednesday, May 31 to learn more.

Discover Tips to Care for Your Child with PH

Join our panel of experts at 2 p.m. EDT Thursday, June 22 as they share their experiences treating and caring for children with PH. Panelists include health care professionals Rachel Sullivan, M.D., and Melissa Magness, M.S.N., APRN, CNP-AC, and parents Jayna Wall and Jeff Harpp. Discover practical advice related to school, activities, health care and more.

Texas Third Graders Rally for Classmate With PH

Hughes Elementary School showed its true colors for World PH Day when students and staff dressed in purple to support third-grader Isla Grey, who has PH. Isla’s class also raised $660 in quarters in April for pulmonary hypertension research. Isla’s mom Jennifer Morrow shares their story in the Right Heart Blog.

United to Cure PH: World PH Day 2023

The pulmonary hypertension community observed World PH Day by sharing social media posts about symptoms, related conditions and facts about PH. Additionally, the Pulmonary Hypertension Association observed World PH Day with two in-person events May 6 and will continue its global awareness efforts throughout May.

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.

What You Need to Know About Medicaid Changes

Learn how to maintain insurance coverage now that the COVID-19 public health emergency is over. Join the Pulmonary Hypertension Association (PHA) at 2 p.m. EDT, Wednesday, May 31, for a free webinar on Medicaid disenrollment. Jaeger Spratt, PHA’s advocacy and treatment access manager, will explain how states are removing beneficiaries from Medicaid plans and how you can navigate the system.

Support Group Forms Book Club

The New York City-Manhattan Support Group recently launched a book club to provide new opportunities for people with pulmonary hypertension (PH) to engage online. Leader Alicia Kubes started the support group in 2018 and has been expanding its focus since the pandemic began. The online group aims to discuss books through the lens of living with PH; patients throughout the U.S. are welcome to attend the June 9 meeting.

PHA Updates its COVID-19 Policy

The Pulmonary Hypertension Association (PHA) recently updated its COVID-19 policy to reflect the Centers for Disease Control and Prevention guidelines. The policy focuses on individual responsibility at PHA events to use proven methods to reduce and prevent transmission.

Detroit Walk Raises Almost $7K for PHA

The Detroit pulmonary hypertension (PH) community raised $6,795 for the Pulmonary Hypertension Association O2breathe walk on May 6. The event featured Tammera Tubolino, who recounted her sister Kristy’s CTEPH journey. The event also featured longtime support group leader Carla Kinsey.

CEO Update: Join Us for World PH Day 2023

Please join the Pulmonary Hypertension Association and more than 80 other patient organizations next week in observing World PH Day. Since 2012, the global pulmonary hypertension (PH) community has come together May 5 to bring attention to this rare lung disease. Whether you have PH, care for someone with PH or are a health care professional, please help us mark this important day.

Update Your Calendar With New PHA 2024 Dates

You might have noticed that we’ve moved the date for PHA 2024 International PH Conference and Scientific Sessions. The conference is now set for Aug. 15-18, 2024, at the JW Marriott in Indianapolis. The new date allows the Scientific Sessions to focus on new guidance and findings from the seventh World Symposium on Pulmonary Hypertension (PH).

What to Do When You’re Running Out of Medication

Like many in the pulmonary hypertension community, you know the stress of waiting for prescription refills and worrying whether they will arrive in time. Although specialty pharmacies try to avoid medication disruptions, errors sometimes happen. The Pulmonary Hypertension Association (PHA) asked several specialty pharmacies about what to do when you’re at risk of missing a dose or need an early refill. Visit the new resource page in PHA’s Insurance Guide.

PHA Journal Addresses New PH Guidelines and Promising New Treatments

The latest edition of Advances in Pulmonary Hypertension addresses basic and clinical pulmonary hypertension (PH) research. Advances is the Pulmonary Hypertension Association’s quarterly peer-reviewed clinical journal. This issue also covers new PH guidelines and includes all abstracts from PHA 2022 International PH Conference and Scientific Sessions.

5 Tips To Find the Right Summer Camp for Your Child with PH

Is your child or teen with pulmonary hypertension dreaming of meeting new friends while participating in fun outdoor activities? Now is the time to look into camps that accommodate children with special needs – and sign yours up. Check out our tips to find a camp with trained health care professionals that meets your child’s interests.

PH Professionals: Learn Best Risk Assessment Practices at Symposium

Discover new ideas for pulmonary arterial hypertension (PAH) risk assessment at the Pulmonary Hypertension Association’s PH Professional Network Symposium. The Sept. 28-30 event in Arlington, Virginia, will feature a session on “Balancing the Art and Science of PAH Risk Stratification,” presented by Susanne McDevitt, D.N.P., ANCP-BC and Melisa Wilson, D.N.P., ACNP, APRN-BC. Learn more about the session and how to submit a late-breaking abstract.

What’s the State of PH? Find Out in the New Issue of Pathlight

The spring 2023 issue of Pathlight examines the state of pulmonary hypertension (PH). Our cover story details how artist Suzanne Miller manages her PH by focusing on mind and body wellness. The issue also includes an in-depth look at new guidelines for PH treatment and diagnosis. Pathlight is an exclusive benefit of Pulmonary Hypertension Association membership.

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