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
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.
Regional Workshop Brings PH Education to Kentucky
More than 70 members of the pulmonary hypertension (PH) community gathered Sept. 17 in Louisville, Kentucky, for PHA On the Road. The free, daylong workshop provided patients, caregivers, family members, health care professionals and industry sponsors with timely information about living with and managing pulmonary hypertension (PH).
Save 20% on PHA Professional Membership
Health care professionals: Save 20% when you become a new Pulmonary Hypertension Association professional member before Nov. 30. By joining our membership network, you can help improve quality of life and care for people with pulmonary hypertension. Our professional members include physicians, nurse practitioners, researchers and other allied health professionals.
CEO Update: Annual Report Reflects Patient-Focused History and Future Impact
The Pulmonary Hypertension Association Annual Report 2021 is now online. The report reflects PHA’s achievements during the second year of the pandemic, the support of our members and selfless efforts of our volunteers. For the first time, PHA’s annual report is solely digital – and interactive. Although the format is new, the report acknowledges PHA’s proudly patient-focused, patient-driven history – and its impact and momentum into the future.
PHA Reignites Advocacy August Campaign
This year’s Pulmonary Hypertension Association’s Advocacy August campaign connected PH advocates with legislators by computer and in-person. Advocates from 10 states met with more than 20 congressional offices to ask for support of the Safe Step Act and H.E.L.P. Copays Act.
PHA Joins Health Care Advocates at White House
The Pulmonary Hypertension Association (PHA) joined health care advocates, lawmakers and others Tuesday on the White House lawn to celebrate the signing of the Inflation Reduction Act. PHA lobbied on behalf of the legislation, which will help people in the pulmonary hypertension (PH) community who receive Medicare benefits. It will also cap out-of-pocket costs and subsidize premium costs for those covered by marketplace insurance plans.
How You Can Support PHA Through Workplace Programs
Whether you’re an employee, retiree or spouse of an employee, workplace giving may be a simple and meaningful way to support the Pulmonary Hypertension Association. By participating in your employer’s giving program, you help extend and improve the lives of those affected by pulmonary hypertension.
Register for Open Enrollment Webinars
Learn how to choose a health insurance plan, and get your insurance questions answered in our PHA Live series on open enrollment. This four-part webinar series is set for 2 p.m. ET each Thursday in October. The series will provide key information to guide you through open enrollment for Medicare and other health insurance plans.
Patient’s Positive Attitude Inspires Nurse to Start Support Group
Debbie Kittel of Gahanna, Ohio, recently started a Pulmonary Hypertension Association support group at The Ohio State University, where she is the pulmonary arterial hypertension nursing program manager. “I am proud of how big the group has grown and how quickly it has taken off.”
Get to Know Our PHA Live Speaker on Open Enrollment
After an introductory session by Jaeger Spratt, Danielle Burkett will present three PHA Live webinars on open enrollment. Join us at 2 p.m. ET each Thursday in October, and get your insurance questions answered. Danielle is a certified medical assistant at Duke University Hospital’s Pulmonary Vascular Disease Center, where she helps patients with insurance issues and financial assistance for medication.
Spread Awareness for September’s Associated Conditions
The Pulmonary Hypertension Association joins the Pulmonary Fibrosis Foundation and Sickle Cell Disease Association of America in September in celebrating their awareness months. Learn more about the PH connection to pulmonary fibrosis and sickle cell disease, and spread awareness on social media with our sample posts and graphics.
Why Your Child With PH Needs a 504 Plan
As the new school year approaches, make sure you set up a 504 plan with your child’s principal, counselor and teacher. 504 plans are designed to accommodate your child’s needs and help them stay on track with their peers.
Web Update: PHA 2022 Highlights
Watch highlights of PHA 2022 International PH Conference and Scientific Sessions. Our recently updated PHA 2022 web page includes videos and information about the four-day event.
Don’t Miss Your Chance to Register for PHA On the Road
Don’t miss your opportunity to attend PHA On the Road Sept. 17 in Louisville. Registration for the free patient and caregiver workshop closes Sept. 12. PHA On the Road features expert-led sessions on pulmonary hypertension treatment, research and disease management.
6 Videos on PH and Connective Tissue Disease
Discover why some people with connective tissue disease develop pulmonary hypertension in a six-part Pulmonary Hypertension Association video series. Connective tissue diseases include lupus, rheumatoid arthritis and scleroderma.
Gather Your Insurance Questions for Our Open Enrollment Webinars
Get ready for this year’s open enrollment season with a series of Pulmonary Hypertension Association webinars. Join us at 2 p.m. ET each Thursday in October for four PHA Live webinars on open enrollment issues.
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.
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.
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).
PAH Trial Participants Inspire Doctor’s Passion for PH Research
Nadine Al-Naamani, M.D., was inspired to become a doctor after growing up in Beirut during the civil war in Lebanon. She knew then that she wanted to help people around her. Today, she treats people with pulmonary hypertension (PH) and other serious lung conditions at Penn Medicine and conducts PH research. She is an assistant professor of medicine at University of Pennsylvania Hospital, a Pulmonary Hypertension Association-accredited PH Care Center. She originally shared her story with Pathlight, PHA’s quarterly member magazine.
Help Advance PH Research
Researchers: It’s not too late to participate in the PHA 2022 Research Room. Five research teams will have a rare opportunity to collect data and biological specimens from the largest gathering of pulmonary hypertension patients. Apply by April 3 to conduct your research at the Pulmonary Hypertension Association’s International PH Conference and Scientific Sessions, June 10-12, Atlanta.
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