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.
19 Years After Diagnosis: Keeping Fit and Staying Hopeful
“I wanted to give up, but with lots of prayers and faith, I eventually started improving.” By Lorraine PolstonLorraine Polston of Amarillo, Texas, was diagnosed with idiopathic pulmonary arterial hypertension (PAH) in 2001. A registered nurse since 1992, she and her husband have
University Student Grapples With New PAH Diagnosis
“There is always something good in every day; we just need to look for it.” Sophia Grothoff, 22, of Bonn, Germany, was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in February 2020. Her story has been edited for style and clarity. I
Coming to Terms with PH
“I have a long road ahead of me, but one day at a time, right?” Jenny Phillips, 52, lives in Woodridge, Illinois. She has a sister, two brothers (including her twin) and nieces and nephews. An army veteran, she has been a
Ranolene Pillay Remembers Her Mom
“My mom taught me many things, but one thing in particular I want to share with all the PHighters...Sometimes the road may get tough, but darling, you are tougher!” By Ranolene Pillay Ranolene Rhissa Pillay, 24, lives in Kwazulu Natal, South Africa,
Lindsey Wheeldon Remembers Haley Willow
“PH wasn’t her identity. Although she was open about having this condition, it never once held her back.”
How Chelsea Kennedy’s PH Diagnosis Changed Her Life
“There is light at the end of the tunnel, and you are more than just PH. We will fight and we will win!” Chelsea Kennedy, 27, has been living with pulmonary hypertension (PH) since 2018. She lives with her five children, husband and
How a PHA Support Group Helped Patient Advocate for His Health
“If I didn’t advocate for myself and put matters in my own hands, I would still be suffering until this day.” By Robert Stewart On March 17, 2017, I could hardly breathe as I played my third day straight of tennis. My
Meet Vlogger Quinland Folkestad, Who Thrives With PH
“I thought my life was over, but through the PHA and friends and family and doctors, I found the help I needed.” In recognition of Rare Disease Day and American Heart Month in February, the Pulmonary Hypertension Association’s (PHA’s) The Right Heart blog brings
Tell Congress to Eliminate Surprise Medical Billing
When people receive out-of-network care in an emergency, they should be billed at in-network rates. Patients should be protected from surprise bills when they receive care they reasonably expect
Get to Know PHA Support Group Leader Evette Britton
This week’s Volunteer Spotlight focuses on Evette Britton, the leader of the Pulmonary Hypertension Association (PHA) Nashville Support Group. She is a member of PHA’s Support Group Leader Advisory
6 Ways the PH Community Flaunts Its Masks
In celebration of World PH Day 2020 in May, the Pulmonary Hypertension Association (PHA) asked the global pulmonary hypertension (PH) community to participate in PHA’s #FlauntYourMask campaign. The campaign
19 Years After Diagnosis: Keeping Fit and Staying Hopeful
“I wanted to give up, but with lots of prayers and faith, I eventually started improving.” By Lorraine PolstonLorraine Polston of Amarillo, Texas, was diagnosed with idiopathic pulmonary
Telemedicine Is Here. Are You Ready?
Join the Pulmonary Hypertension Association (PHA) at 3 p.m. May 29 for a virtual town hall on “Preparing for a Telemedicine Appointment.” Learn what telemedicine entails, how to prepare
Share Your PH Story to Help Protect PH Patients During COVID-19
Share how pulmonary hypertension (PH) has affected your life as part of the Pulmonary Hypertension Association (PHA)’s advocacy campaign, “Together Through Advocacy.” Your story can push Congress to make
University Student Grapples With New PAH Diagnosis
“There is always something good in every day; we just need to look for it.” Sophia Grothoff, 22, of Bonn, Germany, was diagnosed with idiopathic pulmonary arterial
How Cathleen Chapin Helps Find a Cure for PH
Cathleen Chapin (right) doesn’t let PH stop her from enjoying her favorite activity, watching the San Francisco 49ers, with a friend. As a pulmonary hypertension (PH) patient
Join our Advocacy Campaign Kickoff to Educate Congress About PH
Learn to share your story with lawmakers from home. Join Katie Kroner, PHA’s senior director of Advocacy and Treatment Access, and other advocacy experts May 18 for an online
Meet the Zebra Lady: a PH Superhero of Many Stripes
If you were to meet Barbara Thompson, you’d understand why she’s known as the “Zebra Lady.” Not only does she wear zebra print daily, but she also hands out
A+ Performance by Texas Tech Student PHA Volunteer
Adriana Mares was inspired to contribute to the Pulmonary Hypertension Association (PHA) when she saw that the organization was participating in #GivingTuesdayNow. “I’m aware how much PHA has helped
PHA Email Phriends: PH ‘Pen’ Pals for the Modern Age
Looking for coping strategies or helpful tips from someone who knows what you’re going through? The Pulmonary Hypertension Association (PHA) Email PHriends program offers email-based support for patients, caregivers and
PHA Advocacy Success: 2 Ambrisentan REMS Programs to Merge
Pulmonary hypertension (PH) patients no longer have to enroll in two Risk Evaluation and Mitigation Strategy (REMS) programs for ambrisentan. Thanks to the Pulmonary Hypertension Association (PHA)’s advocacy, the
PHA Raises $48K in Giving Tuesday Now Donations
Thank you to everyone who participated in Giving Tuesday Now. Whether you donated, shared or helped raise money for the Pulmonary Hypertension Association (PHA), we are grateful for your
PH Awareness Travels the Globe on World PH Day
People with pulmonary hypertension (PH) throughout the world marked World PH Day May 5 by sharing their experiences with modern and old-school technology. This year’s events largely were virtual because
Check Out PHA’s Spanish-Language Video Resources
The Pulmonary Hypertension Association (PHA)’s recent Spanish-language Facebook Live event on COVID-19 has attracted thousands of viewers to our website and social media channels. The May 1 event featured
Coming to Terms with PH
“I have a long road ahead of me, but one day at a time, right?” Jenny Phillips, 52, lives in Woodridge, Illinois. She has a sister, two
When Old Technology Is New Again: World PH Day Goes Live on Ham Radio
When Jessica Bartky was diagnosed with pulmonary hypertension (PH) seven years ago, she and her husband Jack began searching the internet for information about the disease. They quickly found the
Double Your Support for PHA on Giving Tuesday
Make the most of your financial contribution to the Pulmonary Hypertension Association (PHA). Your contribution will be matched Tuesday, May 5 as part of Giving Tuesday Now. Giving Tuesday
PHA Carries Your Voice to Congress During the COVID-19 Crisis
Navigating life with PH is challenging at the best of times, and COVID-19 has added new stress and uncertainty. PHA is here for you through phone support, virtual meetings,
World PH Day Raises Awareness of Pulmonary Hypertension’s Global Impact
Members of the world PH Community will come together May 5 to share their stories,
Early Diagnosis, Prompt Treatment Offer Hope for Those With Rare Form of Pulmonary Hypertension
November 13 is CTEPH Awareness Day Silver Spring, MD (November 8, 2019) – As
Pulmonary Hypertension Awareness Month Draws Attention to Life-Threatening, Often Misdiagnosed Disease
The Pulmonary Hypertension Association’s ‘PHaces of Hope’ campaign shares stories of those with PH,
Jason Boehme Awarded Grant to Fund Study in Pediatric PAH
Jason Boehme, M.D., received the 2019 PHA Robyn J. Barst, M.D. Pediatric PH Research & Mentoring Grant in honor of Jackson Wall, one of three Pulmonary Hypertension
Research Room Brings Community Together to Advance PH Studies
Researchers who study pulmonary hypertension (PH) can apply now to advance their research at the PHA 2020 International PH Conference and Scientific Sessions, which brings the PH
Young Investigator’s Research Looks at Vascular Remodeling in PAH
Ke Yuan, Ph.D., received the 2019 PHA Aldrighetti Research Award for Young Investigators. The award, one of three Pulmonary Hypertension Association (PHA) research grants awarded last year,
Research Fellow to Study How Inflammation Contributes to PH
Rahul Kumar, Ph.D., received the 2019 PHA/ATS Research Fellowship, one of three individual Pulmonary Hypertension Association research grants awarded last year, to study inflammation and how it contributes
Oxygen Survey May Lead to Better Technology and Advocacy
A team of Johns Hopkins University (Hopkins) engineering graduate students discovered the difficulties people with lung diseases experience accessing and obtaining portable oxygen equipment while shadowing Hopkins
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