PHA News
For patients, families, caregivers and health care professionals
The Right Heart
Taking Life a Day at a Time a Year After Diagnosis
Debra Gonzales, 66, is a just a year into her pulmonary hypertension journey. After a recent doctor visit, she learned her arterial pressure had declined and her heart function had improved. Her pulmonary arterial hypertension doesn’t stop her from spending time with her daughter, mother-in-law, friends and her dog in Redondo Beach, California.
Hole in Heart Leads to PH Diagnosis
Doctors weren’t sure Lillian Cooke would survive the night they discovered her pulmonary arterial hypertension. Three years later, the stay-at-home mom spends time with family and friends, painting, playing video games and listening to music.” I hope my story gives someone else hope,” Lillian writes in the Pulmonary Hypertension Association’s Right Heart Blog. “I will never lose hope, and I’m going to keep fighting until my last breath.”
Dancing Through Life with PH
Pam Vinesett of North Carolina served three years of active duty and 17 years in the army reserves. The mother of seven and grandmother of eight enjoys swimming, fishing and tubing with her husband. In 2014, she noticed shortness of breath and other pulmonary hypertension symptoms. Since her eventual diagnosis and other health challenges, she is doing well and teaches four to six Zumba classes a week.
Seeing PH Diagnosis as a Blessing
Twelve years after her pulmonary hypertension diagnosis, Marcie McGregor credits her faith in God, her doctors and the Pulmonary Hypertension Association (PHA) for where she is today. Marcie shares her story for PHA’s spring fundraising campaign, which begins April 29.
Health Care Exec Breathes Easily After PTE Surgery
Angela Donovan began experiencing shortness of breath in 2019. After she moved for a new career, her symptoms worsened. A work visit to an urgent care clinic led to her chronic thromboembolic pulmonary hypertension diagnosis. She shares her story for Blood Clot Awareness Month.
Appreciating Each Day While Awaiting Transplants
PH changed the life of Jessica Calkins. Jessica, 37, of Yakima, Washington, awaits a double lung and heart transplant for her pulmonary arterial hypertension (PAH).
Georgette Recognized a Rare Catch on the Volleyball Court. His Rare Diseases Spiked Later
“As Dean’s illness progresses, living each and every day is precious. We don’t take it for granted.” Georgette Bridger and her husband of 27 years, Dean, live in Suffolk, Virginia. Together they have four children and a dog Annabell. Dean was
Finding Hope in the PH Community and Research Studies
Morgan Nuchols began to show signs of PH as a baby. Today the 28-year-old participates in the Pulmonary Hypertension Association’s Generation Hope Facebook Support Group for young adults. She also participates in research studies to in hopes of finding a genetic link between pulmonary hypertension and congenital diaphragmatic hernia. She also participates in research studies to in hopes of finding a genetic link between pulmonary hypertension and congenital diaphragmatic hernia.
Featured News
CEO Update: The Importance of In-Person Connections
The Pulmonary Hypertension Association recognizes the importance of in-person connections to health, wellbeing and care management and has resumed some in-person events, including our first PHA On The Road patient and caregiver workshop since late 2019.
6 Sources of Financial Assistance for PH Therapy
Do the high costs of treatment prevent you from receiving treatment you need? The best solution for you depends on the kind of insurance you have, the type of medication you take and availability of financial assistance resources.
Watch Our Outstanding Member Awards Ceremony
Meet the superstars of the pulmonary hypertension community. Watch a video of our Outstanding Member Award ceremony from PHA 2022 International PH Conference and Scientific Sessions. The awards recognize volunteer efforts in patient/caregiver support; advocacy; promotion of quality patient care; and advancing pulmonary hypertension research.
PHA On the Road Speakers Announced
Planning to attend PHA on the Road in Louisville? Find out who’s speaking at this free, daylong workshop presented by the Pulmonary Hypertension Association.
Investigators: Apply for PHA Pediatrics PH Research Award
The Pulmonary Hypertension Association (PHA)’s newest grant supports pediatric pulmonary hypertension research that addresses unmet needs or enhances knowledge of pediatric PH, including classification, diagnosis, treatment and quality improvement and care. The PHA Pediatric PH Research Award will support a pilot study for one year for up to $65,000. Apply by Sept. 12.
Lead a Support Group in Your Area
The Pulmonary Hypertension Association is looking for volunteers to lead support groups. By becoming a support group leader, you will join a nationwide team of volunteers who are passionate about supporting, educating and empowering the pulmonary hypertension community.
Don’t Miss Your Chance to Participate in Advocacy August
As the Congressional August recess approaches, legislators are making plans to meet with constituents in their home states. Make sure to schedule a summer advocacy visit with your members of Congress. Help promote legislation that will benefit those affected by PH.
Share Your Story for Advocacy August
Already scheduled your Advocacy August visit? Share your advocacy experiences with the Pulmonary Hypertension Association’s Right Heart Blog.
‘Navigating Pulmonary Hypertension’ Wins EXCEL award
The Pulmonary Hypertension Association won a silver EXCEL award for “Navigating Pulmonary Hypertension” from the Software & Information Industry Association (SIIA) AM&P Network. The EXCEL awards recognize excellence and leadership in association media, publishing, marketing and communications.
Son’s PH Helps Pediatrician Better Understand Her Patients
As an intensive care pediatrician, Chandani Dezure, M.D., treats critically ill children. After one son was diagnosed with pulmonary hypertension, Dr. Dezure became a caregiver herself. She shares how her son's PH helped her become a better doctor. Her story appeared in the June 2022 issue of Pathlight.
Patient-Caregiver Workshops Resume
On the Road, the Pulmonary Hypertension Association (PHA)’s daylong, regional workshops for patients and caregivers resume this fall. Registration is open for the Sept. 17 PHA On the Road in Louisville, Kentucky.
PHA Journal: How Health Disparities Affect PH Care
The latest issue of Advances in Pulmonary Hypertension addresses health disparity-challenges related to pulmonary hypertension patient care. Advances is the Pulmonary Hypertension Association’s free quarterly clinical journal.
Advisory to the PH Community: Abortion Access
PHA joins many health care organizations deeply concerned about unequal access to medically necessary care in the U.S. Pregnancy is considered high risk for people with pulmonary hypertension because their heart and lungs can’t easily adjust to the demands of pregnancy and childbirth.
Navigating Prior Authorization and Step Therapy
Are you having problems trying to refill your pulmonary hypertension prescriptions? Enlist your care team to help you manage insurance issues. Health insurance companies often control costs by limiting access to expensive care through prior authorization and step therapy.
Investigators: 3 PH Research Opportunities Open Now
The Pulmonary Hypertension Association is accepting applications for two of its research awards and promoting an opportunity to study data from the PHA/NHLBI-funded PVDomics study.
How PHA 2022 Reconnected the PH Community
After a four-year wait, the pulmonary hypertension (PH) community gathered in Atlanta for PHA 2022 International PH Conference and Scientific Sessions. Read our wrap-up, see pictures and watch an emotional, bring-down-the-house performance from Stephen Carter-Hicks.
Meet 7 People Dedicated to Community Service
Who are the remarkable people who received Outstanding Member Awards from the Pulmonary Hypertension Association? Hint: They include a 10-year-old martial arts fan, a recent college grad and decades-long PH fighters.
Thanks for Sharing Your Treatment-Access Challenges With Congress
The pulmonary hypertension (PH) community surpassed the PHA 2022 challenge to send 500 messages to Congress in support of the Safe Step Act. By the end of PHA 2022 International PH Conference and Scientific Sessions, the community sent 565 messages to 198 legislative offices.
Watch: PHA 2022 Highlights
Explore the highlights of PHA 2022 International PH Conference and Scientific Sessions. Hear from speakers and attendees; experience the exhibit hall and education sessions; and feel the emotion of the four-day event in Atlanta.
Watch: PHA 2022 Opening Video
Meet people with pulmonary hypertension, caregivers and health care professionals in this inspiring video shown at the opening of PHA 2022 International PH Conference and Scientific Sessions.
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.
Press Release: Pulmonary Hypertension Education Workshop, PHA On the Road, Comes to Louisville on Sept. 17
PHA On the Road is a free one-day event that offers educational sessions on pulmonary hypertension (PH). Presented by local medical experts and patients, the event provides networking opportunities for people living with PH.
Advisory: Reproductive Health and Pulmonary Hypertension
Pregnancy is considered high risk for people with pulmonary hypertension because their heart and lungs can’t easily adjust to the demands of pregnancy and childbirth.
Press Release: World PH Day
World PH Day puts a spotlight on the global impact of pulmonary hypertension (PH), a rare, complex, life-threatening disease. PH has no cure and affects more than 75 million adults and children of all ethnicities globally.
Investigators: Apply for PHA Pediatrics PH Research Award
The Pulmonary Hypertension Association (PHA)’s newest grant supports pediatric pulmonary hypertension research that addresses unmet needs or enhances knowledge of pediatric PH, including classification, diagnosis, treatment and quality improvement and care. The PHA Pediatric PH Research Award will support a pilot study for one year for up to $65,000. Apply by Sept. 12.
Investigators: 3 PH Research Opportunities Open Now
The Pulmonary Hypertension Association is accepting applications for two of its research awards and promoting an opportunity to study data from the PHA/NHLBI-funded PVDomics study.
June 2022 Research Funding Opportunities
Discover active research funding opportunities from the National Institutes of Health, The International Society for Heart and Lung Transplantation and the American Heart Association.
PHA Offers New Pediatric Research Award
The Pulmonary Hypertension Association is launching a new grant opportunity to support pediatric pulmonary hypertension research. The award will support a pilot study for one year, up to $65,000 a year, that would provide foundational research for a larger study and support additional grant submissions. Learn more.
PHA Names 2022 Aldrighetti Young Investigator
Catherine Simpson, M.D., is the latest recipient of the Pulmonary Hypertension Association (PHA) Aldrighetti Research Award for Young Investigators. The award is for young researchers who show promise of significantly increasing understanding of pulmonary arterial hypertension (PAH).
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