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.
Sydni Burgess (caregiver)
“My hope is…to know there is something to always PHight for.” By Sydni Burgess (caregiver) “My mother, Rebecca "Becky" Burgess was diagnosed with pulmonary hypertension (PH) two years after I was born in 1997. To me, it was a regular day to
Riley’s Story
“Riley has been an amazing PHighter during it all. She doesn’t let it get her down and always has a smile on her face!” By Kelly Wiegele “For most of her early life, we thought Riley was just a normal and healthy
Brigette Thompson: This Is My PAH Story
“Every day that I wake up is a good day because I am still here.” “It all started one morning in 2011 when I went to work. I parked in the parking structure on the first level. I got to the elevator
My Long Journey to PH Diagnosis and My Hope for the Future
“I’m working and raising my children. I’m currently writing a book and creating a blog, so that I can tell my full story. I’m so glad my children can see their mom LIVE with PH!” By CraShundra Richardson One Sunday in September 2015, I
Traveling Salesperson Embarks on New Journey With PH
By Eileen Lepionka “I could barely make the walk through the yard, which was only about 150 feet.” "My Pulmonary Arterial Hypertension (PAH) journey began in August 2014. I was an active salesperson, selling toys at a hospital gift shop on
Gail Merz: PH Warrior Advocates for PH Education
"I live day to day never knowing what the day will bring to me... I just thank the Lord every day for giving me the day and pray for one more." "I resided in the metropolitan Atlanta area from 1950 till 2013. My
Fighting Lupus and PH: Bernadette’s Story
"2004 and 2007. Years that were life altering but have led me to my new normal. They are the years I was diagnosed with lupus and pulmonary hypertension (PH) respectively. "Hello, my name is Bernadette Bonifacio and I’m a Lupus Warrior and PHighter. Having
Find the Right Fitness Routine for You: Rebekah Calverley
“If I don’t push myself a little, I know I would just sit on the couch and a vicious cycle would ensue.” "This month the Boston Marathon took place. A culmination of months of training, countless half marathons and other qualifiers all
Pulmonary Hypertension Awareness Month Inspires Hope, Education
Pulmonary Hypertension Awareness Month in November featured inspiring stories of hope and important educational messages, all of which could not be possible without the participation of everyone in the
PHA Donors Show Record Generosity on GivingTuesday
Thanks to the generosity of the pulmonary hypertension (PH) community, the Pulmonary Hypertension Association (PHA) raised $51,819.30 in donations on GivingTuesday. This year, the Doerge and Blesi families
Copay Grant Applications and 2020 Re-Enrollment: The Assistance Fund
Enroll now for aid from The Assistance Fund, a nonprofit patient assistance foundation that helps patients and families with high medical out-of-pocket costs by providing financial assistance for copays,
Last Chance for Open Enrollment
Open enrollment for two types of insurance ends soon: Medicare Open Enrollment ends Dec. 7, 2019. Visit Medicare.gov to learn more and choose coverage. Marketplace Open Enrollment ends Dec.15,
Dallas Training Session Helps Support Group Leaders Tackle Challenging Issues
With assistance from the PHA Support Group Leader Training Institute, endowed by United Therapeutics, the Pulmonary Hypertension Association (PHA) held a regional support group leader training in Dallas on
PHaces of Hope Continues in December
Although Pulmonary Hypertension Awareness Month has ended, responses to our “PHaces of Hope” campaign were so great that the Pulmonary Hypertension Association (PHA) will continue to post the
Double Your Impact on GivingTuesday, Dec. 3
Help spread the word about this year’s day of generosity, GivingTuesday! On GivingTuesday, Dec. 3, in honor of their daughter Zoe’s 18th birthday, the Doerge and Blesi families
Daughter Finds Inspiration and Strength From Mom
The Pulmonary Hypertension Association’s (PHA’s) The Right Heart blog brings you a story about Sydni Burgess, whose mom was diagnosed with pulmonary hypertension (PH) when she was two. Rebecca Burgess was
PHaces of the Week
Although Pulmonary Hypertension Awareness Month is coming to an end, responses to our “PHaces of Hope” campaign continue. Therefore PHA will continue to post the community’s PHaces into December
Volunteer Spotlight: Finding Joy in Helping Others
Evan Holm is the facilitator for the University of New Mexico Hospital (UNMH) Pulmonary Hypertension Support Group in Albuquerque, N.M. He also transitioned from an inpatient social work role
Scientists Hope to Expand Pre-Clinical Studies of Antibody to Protein Increased in PAH
A group of scientists in the United Kingdom published a paper in Nature Communications this week on what they hope may be a future potential therapy, based on their
Returning to the Stage with PAH
Stephen Carter-Hicks, a long-time singer and Broadway star, is excited to take the stage again after being diagnosed with pulmonary arterial hypertension (PAH) almost 10 years ago. He remembers
Daniel’s Story: The Road to Transplant and Recovery
The Pulmonary Hypertension Association’s (PHA’s) PHaces of Hope blog brings you the story of Daniel Kolopajlo, who lived with idiopathic pulmonary hypertension (PH) until a double lung transplant offered
Support Group Advisory Board Helps Train Leaders
Pulmonary Hypertension Association’s (PHA’s) Support Group Leader Advisory Board convened for its annual meeting on Saturday, Oct. 26 in Atlanta for a day of leadership activities and discussions focused
The PHaces of the Week Awareness Month Features PHaces of Hope
Every day of November as part of Pulmonary Hypertension Awareness Month, the Pulmonary Hypertension Association (PHA) is posting “PHaces of Hope” on Facebook, Instagram, Twitter and LinkedIn. Due
Puerto Rico Support Group Shares PH Knowledge
The Puerto Rico PHA Support Group was invited to exhibit during the 8th Congress of the Coalition of Asthma and other Respiratory Diseases held Sept 20-22. The group showcased
CTEPH Awareness Day Videos, Posts Spark Engagement
Yesterday, the Pulmonary Hypertension Association (PHA) set aside a special day (Nov. 13) to help raise awareness and improve diagnosis of a rare form of pulmonary hypertension (PH) known
18th Annual Luncheon and Conference Spreads Awareness
In honor of Pulmonary Hypertension Awareness month, the Pulmonary Hypertension Association (PHA) joined Michigan PH support groups for their annual PAH Awareness Luncheon and Conference. This 18th annual Michigan
A PAH Diagnosis Brings Hope for More Awareness
The Pulmonary Hypertension Association’s (PHA’s) PHaces of Hope blog brings you a story of hope from a PHighter named Barbara Thompson, who lives with idiopathic pulmonary arterial hypertension (PAH) and makes
Insurance Changes? Tell Your Health Care Team
Individuals impacted by pulmonary hypertension (PH) should contact their PH care team and specialty pharmacy if they anticipate changes in their health insurance in January. Even health insurance provided
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,
Pulmonary Hypertension Association’s On the Road Education Forum Arrives in Kansas City on Oct. 12
Free event offers education about pulmonary hypertension from local medical experts and networking opportunities
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
PHA Presents Research on PH Awareness and Diagnostic Trends
Pulmonary Hypertension Association (PHA) staff and medical leadership presented research findings and interacted with global health care professionals with an interest in pulmonary hypertension (PH) at the
CTEPH Study Finds Higher Survival Rates Among Those Who Have Surgery
Individuals with chronic thromboembolic pulmonary hypertension (CTEPH, World Health Organization Group 4 PH) who have surgery to remove blood clots from the lungs could have a better
Positive Data from INSPIRE Trial Released
New data from “INSPIRE: A Phase 3 Open-Label, Multicenter Study to Evaluate the Safety and Tolerability of LIQ861 in PAH” was presented last week during the 39th
New PHA Clinical Trial Finder Aims to Improve Patient Involvement in PH Research
Dear PH Community, In 1994, just three years after the Pulmonary Hypertension Association (PHA) was founded by three patients and a caregiver, PHA held its first International
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