PHA News Home 2018-09-21T16:59:53+00:00

Darby Hetrick

Living My Best Life With PH

PHA Conference

PHA Board of Trustees

Jesus Cornejo: Big Heart

Film by Enrique Franco Martin

Chloe Temtchine

Facebook Live Mini Concert

Kerry Babylon

The Importance of Family



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.

The Right Heart

Post-Transplant Life is an Unexpected Adventure

By Kathleen Sheffer From left, Kathleen and Monica in the German Alps, with help from a self-timer. Against a fair amount of unfavorable odds, I will be photographing PHA’s 13th International PH Conference and Scientific Sessions. This will be the ninth Conference

Rebekah Calverley Lives an Amazing, Beautiful, Fearless Life with Pulmonary Hypertension

Born in Auckland, New Zealand, Rebekah was sick a lot as a toddler with colds and even pneumonia.  That didn’t stop her from being active like any other child as her parents searched for answers for her continued illnesses. When she was two and

Early Diagnosis and Advanced Care Put Indianapolis Mom with Pulmonary Hypertension on Promising Path

Indianapolis, Ind. (April 10, 2018) -- Donna Sparks combats a progressive life-threatening lung disease with courage, conviction and compassion -- for herself and others who share her fight. Diagnosed three years ago with pulmonary hypertension (PH), Donna is an active participant in myPHA, the

St. Louis Survivor of Deadly Lung Disease Working Hard, Inspiring Others and Breathing Easily

St. Louis, MO (March 20, 2018) -- Amanda Harvey-McKee’s life is the epitome of the notion that if you want to get something done, give it to a busy person. At age 39, she works 60 plus hours a week -- often flying from

Washington, D.C. Golden Glove Lightweight Champion Elvis Medrano Faces Biggest Battle with Deadly Lung Disease Diagnosis

Silver Spring, Md. (March 13, 2018) -- In and out of the boxing ring, Washington, D.C., Golden Glove lightweight champion Elvis Medrano is in a daily battle for his life. At 27, he’s lived six years with pulmonary hypertension (PH), a life-threatening disease also known

PHA Support Group Leader Stephanie Bachelder Wears Many Hats in Meeting With Congressman

PHA support group leader volunteers take on many roles in the pulmonary hypertension (PH) community. Many are living with PH -- others are caregivers or health care professionals -- in addition to being constituents, advocates, friends, mentors and champions of the PH community. Support

How the Unknown Led to Certainty for PhD Student and PH Patient Raele Robison

Raele Robison was a student in a demanding PhD program when she was diagnosed with scleroderma and pulmonary hypertension. Now armed with answers about what was causing her mysterious symptoms, she is living her best life with PH. By Raele Robison I remember the way

The Barefoot Movement: PHighting for a Cure for Jackson

Noah Wall is a singer, songwriter, and fiddler in the award winning acoustic band “The Barefoot Movement.”  Her nephew Jackson Wall was diagnosed with pulmonary hypertension (PH) at one year old. Jackson’s parents hold a golf tournament each year to raise funds and awareness for

Featured News

Analyzing the Effects of PH in Patients with Kidney Disease

by Phyllis Hanlon, Contributing Writer According to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) approximately 14 percent of the general population has chronic kidney disease (CKD);

PHight for Life Brings Community of PHighters Together

The fourth annual PHight for Life event will take place in Rochester, N.Y., Sunday, Nov. 4, during pulmonary hypertension (PH) awareness month. The event is planned and hosted by

PHPN Mentor Program Provides Valuable Lessons to Health Care Professionals

The diagnosis of pulmonary hypertension (PH) is overwhelming in patients’ and caregivers’ lives. It also can prove challenging to health care professionals new to the field. Before health care professionals

The Wrath of Mother Nature: Preparing for Natural Disasters

Natural disasters are frightening, especially for those coping with PH, but good preparation can allay some of the fear. This information can help you be ready for the worst

Georgia Fun Walk Celebrates 15th Year on October 13

The Georgia Fun Walk, launched by Sally Maddox, Ed.D., Pulmonary Hypertension Association (PHA) Board of Trustees secretary, celebrates its 15th walk October 13. This year’s milestone walk promises to

Sickle Cell Disease and PH are No Match for Kentucky Volunteer Nicole Creech

September is Sickle Cell Disease Awareness Month. Sickle cell disease (SCD) is a blood disorder that affects approximately 100,000 Americans, of whom 6-11 percent may develop pulmonary hypertension (PH).

Availability of Implantable System for Remodulin Likely Late 2019

The Food and Drug Administration (FDA) recently approved the Implantable System for Remodulin® (ISR), a collaboration between United Therapeutics Corporation and Medtronic. The ISR is approved for adults with functional

Make the Most of Your Health Insurance: Prepare Now for Open Enrollment

Most types of health insurance limit when participants may enroll or make changes to their coverage. During most of the year, changes and additions are restricted to major life

Tampa Bay PHA Support Group Shares Experience Weathering Hurricane Irma

As the 2018 hurricane season begins, the PHA community reflects on the anniversary of last year’s terrible storms with an empowering tale of community, resourcefulness and courage. By Jodi

Navigating Access to Generic Therapy

The Pulmonary Hypertension Association (PHA) reported Aug. 17 that generic tadalafil was approved by the Food and Drug Administration (FDA) and suggested that pulmonary hypertension (PH) patients taking Adcirca®

Treating PH: Joint Symposium Discusses Options

by Phyllis Hanlon, Contributing Writer Although there are 14 different Food and Drug Administration (FDA)-approved therapies for treating World Health Organization (WHO) Group 1 pulmonary hypertension (PH) (pulmonary arterial hypertension,

Share Your Oxygen Experiences: PHA Responds to Proposed Changes to Medicare Oxygen Coverage

The Centers for Medicare and Medicaid Services (CMS) has proposed significant changes to how home oxygen (also known as supplemental oxygen) is regulated and paid for. The Pulmonary Hypertension Association

Pulmonary Pints Celebrates 10 Years in Baltimore

Pulmonary Pints, an annual fundraiser in Baltimore to raise money and increase awareness of pulmonary hypertension (PH), will celebrate its milestone 10th anniversary Saturday, October 6. Participants will enjoy

Seven-Year Old Jackson Shares Story and Hosts Event to Help PH Patients

Jackson Wall, a seven-year old living with PH, was very busy at the Pulmonary Hypertension Association (PHA) 2018 International PH Conference and Scientific Sessions in Orlando, Fla., this summer,

  • Brad A. Wong

PHA CEO Update: PHA in the Community

Dear PH Community, As we approach Labor Day and begin to transition to the fall season, we have an opportunity to reflect on what was a very busy summer

First-Time Advocates Speak Out on Behalf of the PH Community

"Please don’t be afraid to speak your mind." -Jen Miller, adult with PH and first-time legislative advocate Pulmonary Hypertension Association (PHA) advocates are taking advantage of the August congressional

Examination of PHAR Data Shows Few Patients are Referred to Palliative Care

Although treatment options for WHO Group 1 PH (pulmonary arterial hypertension, or PAH) have increased over the past few decades, symptom severity and quality of life still impose significant

sMiles for Katie Honors Memory of Katie McCarthy Through Awareness-Raising and Fundraising

sMiles for Katie’s 3rd Annual Fundraiser Honoring Katie McCarthy is a fundraising event organized to bring awareness to pulmonary hypertension (PH) and raise money to support the Pulmonary Hypertension

Caution: Accumulator Adjustment Programs at Work

Accumulator adjustment programs are a cost-management strategy some pharmacy benefit managers (PBMs) are using that may place a significant financial burden on individuals with pulmonary hypertension (PH) and other

PHA Weighs in With FDA on Patient Engagement

The Food and Drug Administration (FDA) is drafting guidelines related to patient engagement in the clinical trials process and the Pulmonary Hypertension Association (PHA) is weighing in. Recently, the FDA

PHA Press

Global Community Joins Hearts to Advocate for People Living with a Commonly Misdiagnosed and Deadly Lung Disease

SILVER SPRING, MD (April 13, 2018) – Organizations around the world will join forces on

Early Diagnosis and Advanced Care Put Indianapolis Mom with Pulmonary Hypertension on Promising Path

Indianapolis, Ind. (April 10, 2018) -- Donna Sparks combats a progressive life-threatening lung disease

With the Right Diagnosis, Sharyn Robbins is Back to Bowling with Spare Time to Support the Pulmonary Hypertension Association

Silver Spring, Md. (March 28, 2018) - At Manasquan High School in Manasquan, NJ,

PH Research

Analyzing the Effects of PH in Patients with Kidney Disease

by Phyllis Hanlon, Contributing Writer According to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) approximately 14 percent of the general population has chronic kidney

Examination of PHAR Data Shows Few Patients are Referred to Palliative Care

Although treatment options for WHO Group 1 PH (pulmonary arterial hypertension, or PAH) have increased over the past few decades, symptom severity and quality of life still

Bellerophon Therapeutics Announces Interim Results of Nitric Oxide Clinical Trial in Pulmonary Arterial Hypertension

Bellerophon Therapeutics announced this week that its Phase 3 clinical trial of pulsatile inhaled nitric oxide (iNO) for World Health Organization (WHO) Group 1 PH (pulmonary arterial hypertension,

Fatigue: Under-Recognized and Unaddressed in PH

by Phyllis Hanlon, Contributing Writer Symptoms that are commonly experienced by people with pulmonary hypertension (PH) — such as shortness of breath, light-headedness, chest pain, swelling and

  • Zhiyu Dai, Ph.D.

Participation in PHA Conference Opens Doors for Northwestern University Researcher

Zhiyu Dai, Ph.D., a researcher at Northwestern University and assistant professor of research at Northwestern University Feinberg School of Medicine in Chicago, has presented his work during

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