PHA News Home 2018-05-02T20:47:26+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

Riders Rally in Memory of Jonah

More than 500 people gathered June 23 in Murfreesboro, TN, to honor the memory of Jonah Guider at a fundraising event unlike any other Pulmonary Hypertension Association (PHA) event

2018 PHA Outstanding Members Awards Presented During Conference

The Pulmonary Hypertension Association (PHA) would not be able to achieve its work without the dedication and excellence of the entire PH community. The individuals recognized during a June

Dr. Fagan Assumes PHA Board of Trustees’ Helm

Karen A. Fagan, M.D., began her term as Pulmonary Hypertension Association (PHA) Board of Trustees (BOT) chair during a July 1 ceremony at PHA’s 2018 International PH Conference and

Rare Disease Caregiving Report Paints a Portrait of PH Caregivers in the U.S.

This article by Mike Knaapen, Director, Patient and Caregiver Programs and Lisa Weber, Vice President, Greenwald and Associates, first appeared in Issue 2 2018 of Pathlight magazine. Become a

  • Welcome to Conference

Highlights of PHA’s 2018 International PH Conference and Scientific Sessions in Photos

Whether you were or were not able to attend PHA’s 2018 International PH Conference and Scientific Sessions this past weekend in Orlando, Fla., you can glimpse the highlights and

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

NEW! PHA Roadmap to Hope a must-read resource for people newly diagnosed with PH

The Pulmonary Hypertension Association (PHA) has created a new resource for people who have recently been – or are at risk of being – diagnosed with pulmonary hypertension (PH).

Conference Speaker Spotlight: Norman Stockbridge, M.D., Ph.D.

The Pulmonary Hypertension Association (PHA) Scientific Sessions Planning Committee has announced Norman Stockbridge, M.D., Ph.D., director of the Division of Cardiovascular and Renal Products (DCaRP) in the Center for Drug

Conference Speaker Spotlight: Sagar Lonial, M.D., FACP

Prompted by recent successes in the field of oncology in precision medicine, the Pulmonary Hypertension Association’s (PHA) Scientific Sessions Committee has invited Sagar Lonial, M.D., FACP, an internationally-recognized leading

PHA-Funded Research Discovers Link Between Cancer Protein and Fibrosis in PAH Patients

A new molecular mechanism in the development of World Health Organization (WHO) Group 1 pulmonary hypertension (PH) – pulmonary arterial hypertension (PAH) – has been discovered by investigators from the

Switching Gears, a Different Kind of Support Group Leader

This article by Emily K. Outtarac, Administrative Assistant, Medical Services, first appeared in Issue 1 2018 of Pathlight magazine. Become a member of PHA to receive this quarterly publication

Conference Attendee Profile: The University of Michigan Pulmonary Hypertension Team

PHA News periodically runs Q&A style profiles of pulmonary hypertension (PH) health care professionals and programs that are participating in PHA’s 2018 International PH Conference and Scientific Sessions. By Susie

PHA Educates Congress about PH During Capitol Hill Lunch

The Pulmonary Hypertension Association (PHA) hosted a lunch briefing in Washington, DC, Wednesday, June 6, for members of Congress and their staff. Oksana A. Shlobin, MD, FCCP, a director

Pediatric Focus at PHA’s 2018 International PH Conference and Scientific Sessions

Steven H. Abman, M.D. David B. Frank, M.D., Ph.D. Stephanie Siehr Handler, M.D. Uyen Truong, M.D. Erika S. Berman Rosenzweig, M.D.

Conference Speaker Spotlight: Michael Snyder, Ph.D.

Because genetics are essential to the discussion about precision medicine, the Scientific Sessions Committee is excited to feature Michal Snyder, Ph.D., Stanford Ascherman professor and chair of Genetics and

2018 PHA Celebrity Champion, Elvis Medrano, to Speak at PHA’s 2018 Conference

Washington, D.C., Golden Glove Lightweight Champion and PHA celebrity champion Elvis Medrano will join the PH community at PHA’s 2018 International PH Conference and Scientific Sessions to share his

PHA’s Congressional Luncheon and Call-In Day: Two Ways to Get Congress Involved in the PHight

“Oh! My grandfather has hypertension!” Have you ever heard a response like this when trying to explain pulmonary hypertension (PH)? Members of Congress make laws that impact the PH community

Early Intervention: Better Clinical and Economic Outcomes

by Phyllis Hanlon, Contributing Writer   Researchers who study WHO Group 1 PH (PAH, pulmonary arterial hypertension) have shown that drugs may delay progression of the disease, reduce symptoms and improve

Diagnosing and Treating Older Patients with PH: A Complex Process

by Phyllis Hanlon, Contributing Writer   In 2016, the Population Reference Bureau released a report that projects the number of people age 65 and older will more than double from

PH Support Group Raises Awareness for PH at Teaching Hospital Staff Safety and Quality Event

March 13th may have brought a nor’easter to New Hampshire, but that didn’t stop Jane Armstrong and Deb Cantlin RN, MS from promoting awareness of pulmonary hypertension at a

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

Conference Speaker Spotlight: Norman Stockbridge, M.D., Ph.D.

The Pulmonary Hypertension Association (PHA) Scientific Sessions Planning Committee has announced Norman Stockbridge, M.D., Ph.D., director of the Division of Cardiovascular and Renal Products (DCaRP) in the Center

Conference Speaker Spotlight: Sagar Lonial, M.D., FACP

Prompted by recent successes in the field of oncology in precision medicine, the Pulmonary Hypertension Association’s (PHA) Scientific Sessions Committee has invited Sagar Lonial, M.D., FACP, an

PHA-Funded Research Discovers Link Between Cancer Protein and Fibrosis in PAH Patients

A new molecular mechanism in the development of World Health Organization (WHO) Group 1 pulmonary hypertension (PH) – pulmonary arterial hypertension (PAH) – has been discovered by investigators

Pediatric Focus at PHA’s 2018 International PH Conference and Scientific Sessions

Steven H. Abman, M.D. David B. Frank, M.D., Ph.D. Stephanie Siehr Handler, M.D. Uyen Truong, M.D. Erika S. Berman

Conference Speaker Spotlight: Michael Snyder, Ph.D.

Because genetics are essential to the discussion about precision medicine, the Scientific Sessions Committee is excited to feature Michal Snyder, Ph.D., Stanford Ascherman professor and chair of

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