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

The Right Heart

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.

Reenergized and Holding on to Hope

In 1966, 8-year-old Laura Hooley underwent surgery to repair a congenital heart defect. The surgery allowed her to play volleyball, ski and enjoy relatively good health. But her CHD eventually led to pulmonary hypertension. For American Heart Month, she shares what gave her new hope.

How the Pandemic Delayed My PAH Diagnosis

Mark Synder of Waxhaw, North Carolina, was awaiting a cardiopulmonary exercise test in March after his first visit to a pulmonary hypertension (PH) specialist. The test was canceled as the COVID-19 pandemic forced closures of clinics, businesses and public spaces.

Emergency Prep: Surviving Poor Air Quality

Evans Wilson and his wife Alicia were recently affected by the smoke from the wildfires that raged through the West Coast. Evans was diagnosed with pulmonary arterial hypertension (PAH), pulmonary fibrosis (PF) in October 2014 and chronic thromboembolic pulmonary hypertension (CTEPH) in December 2016. This is his story.

Pastoring in a Pandemic and Finding Resilience

Diana Lewis, 57, lives in Rio Rancho, New Mexico, with her husband of 28 years, Adrian, and her son Joshua, 29, who has autism spectrum disorder. Diana, a pastor, taught pre-K and elementary school for 14 years. She was diagnosed with pulmonary hypertension (PH) five years ago. She shares her story about dealing with the pandemic.

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Featured News

Help Fight Copay Accumulators

Colleen, chair of the Pulmonary Hypertension Association (PHA) Board of Trustees, testified March 9 in support of a Connecticut bill to end the cost-shifting practice, which puts a higher burden on the patient. PHA President and CEO Matt Granato provided written testimony in support of the legislation.

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.

Father Honors Daughter’s Memory Through Fundraising

Two years ago, Gary Atkinson created a fundraising team for the Boston O2breathe Walk to honor his daughter’s memory. Gary, a former resident of West Townsend, Massachusetts, named the team “Because of Sarah” for his daughter, who was born with pulmonary hypertension and died almost 21 years ago at age 18.

CEO Update: 30 Milestones in 30 Years

How far we’ve come since our beginnings at a kitchen table! As the Pulmonary Hypertension Association celebrates its 30th anniversary, we are proud to unveil an interactive timeline that provides the shared history of our organization and the PH community. Although we’ve accomplished far more than “30 Milestones in 30 Years,” the timeline highlights major achievements over our first three decades.

Habla español? Join our Spanish-Language Support Group

The Pulmonary Hypertension Association is launching a monthly telephone support group for Spanish-speaking patients. The first call is at 8 p.m. April 28 EDT. Future calls will be at 8 p.m. on the fourth Wednesday of every month. Register or join by phone or computer. Email us or call 301-565-3004 ext. 777 (in English).

Get to Know the PHA Chair

Join Colleen Brunetti, M.Ed., C.H.C, at 8 p.m. EDT Friday, April 9 for a conversation about grief, hope and pulmonary hypertension (PH). Colleen, the second patient to chair the Pulmonary Hypertension Association Board of Trustees, will share her perspective as a PH patient and leader. Bring your questions, share your stories and connect with the community.

Detroit Family Raises Money to Provide Hope

Candace and her family became involved in the Detroit O2breathe Walk to give back and get more involved in the PH community. She met others with PH like me through the walk, giving her hope and people to relate to.

Act Now: Ask Congress to Increase NIH and CDC Funding

As Congress develops the FY 2022 federal budget, ask your members of Congress to increase funding for the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention. Pulmonary hypertension researchers depend on NIH grants to support their work.

New Guide Available about PH That Occurs at Birth

The Pulmonary Hypertension Association recently published a new resource about persistent pulmonary hypertension of the newborn. The handout is intended to educate health care providers and parents about the condition, risks and treatment.

How Does PH Affect Kids?

Join the Pulmonary Hypertension Association (PHA) at 3 p.m. Wednesday, March 31 for “PH and Your Child.” Eric Austin, M.D., of Vanderbilt Children’s Hospital, will lead the Facebook Live discussion about heritable pulmonary arterial hypertension, persistent pulmonary hypertension of the newborn and how pediatric PH is treated.

Get Help Applying for Disability Benefits

Applying for Social Security Disability Insurance can seem intimidating, but the Pulmonary Hypertension Association (PHA) walks you through the process. Discover tips for building your case, information about the appeals process and more in PHA’s online insurance guide. SSDI is a cash benefit that helps cover expenses for people who no longer can work because of a medical disability.

CEO Update: Turning a Corner

Few people would have predicted last March that we’d experience a year under “quarantine.” As the pandemic enters its 12th month, it marks a sad milestone for the U.S and the world, with more than 500,000 COVID-19 deaths in this country and 2.53 million worldwide. Yet, now that three vaccines have been approved for use in the U.S., and a few more are in development or in use elsewhere, we can begin to see the light at the end of the tunnel.

See our FAQ for COVID-19 Vaccine Updates

The Pulmonary Hypertension Association updated two COVID-19-related Frequently Asked Questions. Our vaccine and treatment FAQ includes information about the new COVID-19 vaccine developed by Johnson & Johnson's Janssen Pharmaceuticals and pulse oximeters.

Share Your Pandemic Journey

Share how your life has changed in the last 12 months or how the pandemic has affected your PH. Submit your story to the Pulmonary Hypertension Association’s Right Heart Blog.

Supporting the Fight to Find a Cure

Peter Pierce of Oklahoma City has participated in the Pulmonary Hypertension Association (PHA) Right Heart Fight 5K and Walk since his 2015 diagnosis. He says his annual donations support PHA’s mission to extend and improve the lives of those affected by pulmonary hypertension.

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PH Research

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.

PHA Names Research Award Recipient

Vineet Agrawal, M.D., Ph.D., is the 2020 recipient of the Pulmonary Hypertension Association’s Aldrighetti Research Award for Young Investigators. Dr. Agrawal is a physician-scientist and instructor of medicine at Vanderbilt University Medical Center.

How Does Body Weight Affect PAH?

A new article based Pulmonary Hypertension Association Registry (PHAR) data suggests body weight plays a complex, important role in pulmonary arterial hypertension (PAH). The article, which recently was published in the Annals of the American Thoracic Society, investigated the effects of patient weight on day-to-day activities.

Find Out the Latest in PH Research

Learn about the latest discoveries in pulmonary hypertension (PH) research. Join the Pulmonary Hypertension Association (PHA) at 3 p.m. EDT, Oct. 9 for “Advancements in PH Research.” Dr. Todd Bull will provide an update on the scientific discoveries and research that could lead to the next generation of PH therapies.

How to Maximize Your Support for PH Research and Awareness

Does your employer have a matching gift program? If so, you can double your contribution to the Pulmonary Hypertension Association (PHA). Depending on the employer, you might be eligible to provide twice the support for the pulmonary hypertension (PH) community, whether you’re an employee, spouse of an employee or retiree.

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