PHA News
For patients, families, caregivers and health care professionals
The Right Heart
Former Teacher Finds Meaning as Support Group Leader
Becoming a support group leader has added meaning to Les Freeman’s life. The former teacher says being a support group leader is much like preparing lessons: He tries to blend education along with socialization. Les, who leads the Central Oregon PHA Support Group with his wife Michele, shares his story with the Pulmonary Hypertension Association’s Right Heart Blog.
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
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).
Featured News
Try a Healthful Holiday Recipe
As Pulmonary Hypertension Awareness Month continues, help us raise awareness by downloading and sharing today’s PH Awareness Month Calendar activity. Try a new recipe or share your favorite tips to help you eat healthfully during the holidays. A low-sodium diet can help people prevent fluid retention or edema.
PH Professionals: Submit Your Proposals for 2023 PHPN Symposium
The Pulmonary Hypertension Association is accepting abstract and speaker proposals for the 2023 PH Professional Network Symposium. The event is set for Sept. 28-30, 2023, in Arlington, Virginia. Submit proposals by Jan. 16, 2023.
Hundreds Gather at California Walks to Raise Awareness
Health care professionals, patients, families, caregivers and industry supporters celebrated the start of Pulmonary Hypertension Awareness Month Nov. 5 at California O2breathe walks in Fresno and Monrovia. More than 225 attendees participated in the Central California O2breathe Walk at the UCSF-Fresno Community Regional Medical Center. The ninth annual Monrovia O2breathe PHun Walk attracted more than 200 attendees.
How a New Jersey Support Group Leader Honors Her Late Son
Bonnie Patricelli memorializes her son Ryan Juntti through her volunteer work for the Pulmonary Hypertension Association (PHA). She and Ryan revived PHA’s South Jersey Support Group in 2008, and she continues to co-lead the group since Ryan’s 2015 death. Bonnie’s story appears in the fall issue of Pathlight, PHA’s quarterly member magazine.
Join the Liu Family in Supporting PHA
The Liu family was vacationing in the Netherlands in 2012 when their 2-year-old daughter, Esther, had a heart attack. Two days later, she was diagnosed with pulmonary arterial hypertension, with an unknown cause. Since then, she has received a double lung transplant and travels all over the world with her mother Michelle, a physician and Pulmonary Hypertension Association (PHA) board member, to share their PH journey. Dr. Liu, shares that story as part of PHA’s fall fundraising campaign.
It’s Pulmonary Awareness Month. Help spread the word about PH!
Join the Pulmonary Hypertension Association in November by promoting Pulmonary Hypertension awareness. Visit our PH Awareness Month calendar and toolkit to download shareable resources. This year’s theme is “PHacing the Future Day by Day.” Help us spread the word by sharing our social media posts and resources.
Raise Awareness for Pediatric PH
October is Children’s Health Awareness Month, so we’re promoting awareness of pediatric pulmonary hypertension (PH), which affects children under 18. Parents and children with PH often need to learn special considerations for attending school, transitioning to adult PH care and more.
Right Heart Fight Raises $39K in Oklahoma City
The Oklahoma City pulmonary hypertension (PH) community raised more than $39,000 for the Pulmonary Hypertension Association at the sixth annual Right Heart Fight. The Oct. 22 event attracted people with PH, families, friends and health care professionals. The event featured lunch, dessert, yard games, a silent auction and a remembrance walk.
PHA Journal Covers CTEPH-Related Issues
The newest issue of Advances in Pulmonary Hypertension is now online. Volume 21, Issue 3 is guest-edited by Gustavo Heresi, M.D., M.S., and Richard Krasuski, M.D. The issue focuses on chronic thromboembolic pulmonary hypertension challenges, such as under-recognition of the disease and delayed diagnosis.
Study: Sotatercept in Combined Therapy Can Improve PAH Outcomes
Results of a Phase 3 study showed that sotatercept added to FDA-approved therapy improved the primary endpoint in six-minute walk distance and secondary efficacy outcome measures. The Phase 3 STELLAR trial evaluated the safety and efficacy of sotatercept for adults with pulmonary arterial hypertension.
Support Group Leaders Participate in Regional Training
Leaders from Pulmonary Hypertension Association support groups in Ohio, Kentucky, Michigan and Indiana recently participated in a regional training summit. The Sept. 18 event in Louisville, Kentucky, was an opportunity for leaders to meet, share information and support each other. Leaders discussed confidentiality, welcoming and supporting attendees, how to ensure everyone has a chance to share, managing difficult situations, and other key aspects of support group meetings.
How You Can Raise PH Awareness in November
Join the Pulmonary Hypertension Association (PHA) in November to celebrate Pulmonary Hypertension Awareness Month. Help us raise awareness about PH with downloadable tools and shareable resources. This year’s theme is “PHacing the Future Day by Day.” Throughout November, PHA will share information about pulmonary hypertension risk factors and symptoms through its award-winning interactive, PH Awareness Month calendar.
Do You Use a CADD Legacy Pump? Be Aware of Potential Cassette Issues
Some people who use CADD Legacy pumps for Remodulin, Veletri or Flolan have encountered unpredictable “no disposable” alarms. The no disposable alarm is supposed to show that no medication cassette is present. However, the alarms sometimes go off when cassettes are correctly loaded.
New Pathlight Reflects PH-Related Transitions
If you’re a member of the Pulmonary Hypertension Association (PHA), you should have received the September 2022 issue of Pathlight, our member magazine. The September cover story recaps the joy and excitement of PHA 2022 International PH Conference and Scientific Sessions. As our first in-person event since 2019, PHA 2022 reflects September issue’s theme, transition. The issue also recognizes the many kinds of transitions our community encounters with pulmonary hypertension.
Philadelphia Walk Raises $30K for PHA
The Philadelphia-area pulmonary hypertension community raised $30,000 at its first in-person O2breathe walk since the pandemic began. The Oct. 8 event in Philadelphia’s South Street Headhouse District featured a celebration of the participants and top fundraising teams and individuals.
Learn the Connection Between the Lungs and Liver
October is Liver Disease Awareness Month. This month, the Pulmonary Hypertension Association spreads awareness of liver health, including symptoms of portopulmonary hypertension. Download about brochure and view our videos to learn more.
Get Ready for Our Open Enrollment Webinars in October
Get your questions on insurance and Medicare answered in our PHA Live webinars on open enrollment. The webinar series begins Oct. 6 and continues every Thursday in October. Danielle Burkett, C.M.A, of Duke University, will present two webinars on Medicare and participate in the final Q&A session with PHA’s Jaeger Spratt, M.S.W., who also will present the first session.
Act Now: Protect the PH Community from Discrimination
You have an opportunity to increase protections against health care discrimination. Submit your comments to the Health and Human Services Department about a proposed update to the Affordable Care Act. The change would expand protections based on race, ethnicity, language, age, disability and sex, including pregnancy, sexual orientation and gender expression.
How to Prepare for Power Outages and Other Emergencies
Many people in the pulmonary hypertension community are preparing for power outages related to Hurricane Ian. If you’re in the path of a hurricane or other disaster, make sure you’re prepared for disruptions to utilities, medication and other supplies with the Pulmonary Hypertension Association’s disaster-readiness resources.
Spotlight on Support Groups
With some Pulmonary Hypertension Association support groups shifting from virtual to hybrid or in-person meetings, support group members have come up with creative ways to reconnect. Learn what support groups in Chicago, Los Angeles and Minneapolis-St. Paul, are doing to build connections.
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: November is PH Awareness Month
The Pulmonary Hypertension Association’s “PHacing the Future Day by Day” campaign strives to educate people about pulmonary hypertension.
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.
Try a Healthful Holiday Recipe
As Pulmonary Hypertension Awareness Month continues, help us raise awareness by downloading and sharing today’s PH Awareness Month Calendar activity. Try a new recipe or share your favorite tips to help you eat healthfully during the holidays. A low-sodium diet can help people prevent fluid retention or edema.
PH Professionals: Submit Your Proposals for 2023 PHPN Symposium
The Pulmonary Hypertension Association is accepting abstract and speaker proposals for the 2023 PH Professional Network Symposium. The event is set for Sept. 28-30, 2023, in Arlington, Virginia. Submit proposals by Jan. 16, 2023.
Hundreds Gather at California Walks to Raise Awareness
Health care professionals, patients, families, caregivers and industry supporters celebrated the start of Pulmonary Hypertension Awareness Month Nov. 5 at California O2breathe walks in Fresno and Monrovia. More than 225 attendees participated in the Central California O2breathe Walk at the UCSF-Fresno Community Regional Medical Center. The ninth annual Monrovia O2breathe PHun Walk attracted more than 200 attendees.
How a New Jersey Support Group Leader Honors Her Late Son
Bonnie Patricelli memorializes her son Ryan Juntti through her volunteer work for the Pulmonary Hypertension Association (PHA). She and Ryan revived PHA’s South Jersey Support Group in 2008, and she continues to co-lead the group since Ryan’s 2015 death. Bonnie’s story appears in the fall issue of Pathlight, PHA’s quarterly member magazine.
Join the Liu Family in Supporting PHA
The Liu family was vacationing in the Netherlands in 2012 when their 2-year-old daughter, Esther, had a heart attack. Two days later, she was diagnosed with pulmonary arterial hypertension, with an unknown cause. Since then, she has received a double lung transplant and travels all over the world with her mother Michelle, a physician and Pulmonary Hypertension Association (PHA) board member, to share their PH journey. Dr. Liu, shares that story as part of PHA’s fall fundraising campaign.
