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.
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
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, or PAH)
PHA Provides Tools to Help Parents and Children With PH Prepare for New School Year
The Pulmonary Hypertension Association (PHA) offers comprehensive resources for parents of children living with pulmonary hypertension (PH) to prepare for back-to-school season. These tools provide help for parents of children
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 fatigue —
Milwaukee-Area Walkers Step Out for PHA
The sixth annual Steps for Stripes Fun Walk and Paws in the Park for PH will take place in Brookfield, Wis., Saturday, August 25. The walk originated as a
Learning to Live Your Best Life: Join PHA on the Road in 2018
The Pulmonary Hypertension Association (PHA) announces the dates and cities for two PHA on the Road: PH Patients and Families Education Forums for 2018. Forums are scheduled in Long
United Therapeutics Receives FDA Approval for the Implantable System for Remodulin®
United Therapeutics Corporation announced July 31 that it had received approval from the Food and Drug Administration (FDA) for Remodulin® (treprostinil) to be used in the Implantable System for Remodulin®
2018 PHA Conference Session Provided Insights into PH Advances in China
By Huan Huang, cofounder and director of iSEEKPH Hope Center and presenter at PHA’s 2018 International PH Conference and Scientific Sessions In the treatment of pulmonary hypertension (PH), China has
In Memorium: James “Jim” Ryan
We are saddened at the passing of our friend and supporter James “Jim” Ryan. Last month, Mr. Ryan received the 2018 PHA Philanthropy Award at PHA’s International Conference and
Member Photos Showcase 2018 PHA Conference Experiences
Attendees at the Pulmonary Hypertension Association’s (PHA) 2018 International PH Conference and Scientific Sessions in Orlando, Fla., shared experiences from their perspectives through photos posted on Facebook and Instagram.
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 the past
PHA Brings Your Voice to Capitol Hill: Treatment Access and Quality Care
During the past month, the Pulmonary Hypertension Association (PHA) and members of the pulmonary hypertension (PH) community have communicated with Congress in unique ways. Hundreds of attendees at PHA’s
O2 breathe™ Events Raise Funds and Awareness Across the Country
During 2018, the Pulmonary Hypertension Association (PHA) will host twenty O2 breathe™ (pronounced: oh-to-breathe) fundraising events nationally. PHA works closely with local volunteers, PHA Support Group Leaders, Pulmonary Hypertension Care
PHA Conference Art Gallery Showcases Community Talent
This year at PHA’s International PH Conference and Scientific Sessions, we hosted our first art gallery! Community members were invited to enter their artwork for review and selection by
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
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).
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,
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
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
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
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