PHA News
For patients, families, caregivers and health care professionals
The Right Heart
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.
PAH Diagnosis Leads to New Outlook on Life
A month after her diagnosis, Wendy McBride was sitting in her living room attached to a central line. Despite a five-year prognosis, she chose to live rather than die. Her life changed for the better as she learned to cope through diet, exercise and a quit-feeling-sorry-for-yourself attitude. She discovered a strength she never knew she had.
Former Teacher Educates Professionals About the Patient Experience
After a 42-year education career, Missy Storm volunteers for the Pulmonary Hypertension Association and the hospital where she underwent a pulmonary thromboendarterectomy in 2018. She started by sharing her experiences with medical staff fulfilling their continuing education requirements.
Featured News
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.
O2breathe Fundraising Walks Return
The Pulmonary Hypertension Association (PHA)’s O2breathe fundraising walks have returned in-person for the first time since 2019. The pulmonary hypertension (PH) community has come together this spring to raise money for PHA programs and services. Read about the events in Northern Virginia, Southern California and Tampa, Florida.
PHA Participates in Event to Educate European Policymakers About PH
The Pulmonary Hypertension Association Europe recently shared its updated call to action, “Unmet Needs of Patients with Pulmonary Hypertension – 2022” with the European Parliament. The call to action, which launched in 2012, states the importance of sharing PH knowledge across geographic boundaries. PHA CEO Matt Granato attended.
PHA Registry Enrollment Reaches 2,022 in 2022
Enrollment in the Pulmonary Hypertension Association Registry (PHAR) has surpassed 2,000 participants. The registry includes data from patients at more than 80 PHA-accredited PH Care Centers. The data represents demographic characteristics, diagnosis and treatment information, and quality-of-life metrics.
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.
Give Hope to the PH Community
Marcie McGregor treasures every opportunity to wrap her arms around her granddaughters. After her pulmonary arterial hypertension (PAH) diagnosis in 2012, she didn’t think she’d live to see grandchildren. Marcie shares how the Pulmonary Hypertension Association (PHA) helped through every step of PH journey through its resources, support group and biennial conference. Her story is a reminder that when you give to PHA, you’re giving people with PH hope for the future.
Act now: Urge Congress to Increase NIH Research Funding
Congress is already working on the budget for fiscal year 2023. That’s why it’s important to ask lawmakers now to increase investment in the National Institutes of Health (NIH). Increased funding will ensure life-saving research can continue.
PHA Offers New Research Grant
The Pulmonary Hypertension Association (PHA) is accepting applications for its new Innovation Research Award. The award supports new areas of pulmonary hypertension research that couldn’t have been explored without PHA funding. Any areas of innovative pulmonary hypertension research will be accepted. Up to $60,000 a year for two years is available.
World PH Day Raises Awareness for Pulmonary Hypertension’s Global Impact
The Pulmonary Hypertension Association will join more than 80 organizations around the world May 5 to mark World PH Day. PHA’s World PH Day theme this year is “Pulmonary Hypertension Has No Borders.” PH can affect anyone regardless of age, sex, race, social or ethnic background. New in 2022, PHA and the Pulmonary Vascular Research Institute are jointly focusing on treatment access, particularly for those affected by war and tragedy.
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.
Take Action for World PH Day
Celebrate World PH Day by enlisting elected officials in the fight against pulmonary hypertension (PH). Some advocates are meeting with legislators May 5 to ask them to advance the Pulmonary Hypertension Association’s priority bills. Amplify their impact by sharing your message with Congress from home.
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.
Sarcoidosis and Sjogren’s Syndrome: Managing PH and Rare Disease
This month, the Pulmonary Hypertension Association (PHA) joined the Foundation for Sarcoidosis Research and the Sjogren’s Foundation to awareness months for the rare diseases that can cause pulmonary hypertension.
Participate in the PHA 2022 Fashion Show
Show how you dress up or conceal your infusion pumps/tubes or portable oxygen canisters at the PHA 2022 fashion show. The June 11 event is a popular feature of the Pulmonary Hypertension Association’s biannual International PH Conference and Scientific Sessions. Choose from four categories to style your outfit: formal wear, pulmonary hypertension pride, sports and superheroes. All patient attendees are eligible to participate, including children.
CEO Update: Supporting the Ukrainian PH Community
The Russian invasion of Ukraine has caused life-threatening challenges for people with rare and chronic diseases, especially those with pulmonary hypertension (PH). The Pulmonary Hypertension Association’s partner organizations are working with patient groups, health care providers and pharmaceutical companies to improve treatment access for those affected by the war. The Pulmonary Hypertension Association’s partner organizations are working with patient groups, health care providers and pharmaceutical companies to improve treatment access for those affected by the war.
Discover the Science Behind PHA 2022’s Scientific Sessions
Health care professionals: Join us June 9 through 12 for PHA 2022 International PH Conference and Scientific Sessions. “This is the only conference … where patients are not only the focus of the meeting, but also attendees,” Michael Risbano, M.D., says. “It's a flipped script on the traditional conference approach, and it makes this conference that much more meaningful.”
Why Policymakers Should Care About PH, Patient Empowerment and Early Screening
Pulmonary Hypertension Association CEO Matt Granato will join leaders of other rare disease groups April 26 to educate the European Parliament about pulmonary hypertension (PH). The event will be live in front of parliament, but it will be broadcast on Facebook Live at 4 a.m. EDT, so you might want to watch the recording afterward. Topics include treatment access, clinical research and innovation, screening and awareness, and psychosocial support.
7 Stories that Share the Importance of Organ Donations
The Pulmonary Hypertension Association joins Donate Life America this month to encourage organ donations. Lung transplants can change the course of some pulmonary hypertension treatment plans. PHA encourages those whose lives have been changed by an organ donation to share their stories and educate others on this life-saving topic.
In-Person Support Groups Resume as Online Meetings Continue
Some Pulmonary Hypertension Association (PHA) support groups have begun to meet in-person for the first time in two years. Groups that meet in-person must follow PHA’s In-Person Meeting Policy to protect attendees. Support group leaders can choose to hold in-person, virtual or hybrid (in-person with virtual elements) meetings.
How Do You Find and Maintain Hope? Get Inspired With New Pathlight
This March issue of Pathlight is about creating and maintaining hope with pulmonary hypertension (PH). In this issue, people with PH and those who care for them share activities and experiences that inspire them to keep pushing forward. They intend for their stories to give hope to others.
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.
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.
How We Sparked PH Awareness in November
The pulmonary hypertension (PH) community joined together to celebrate PH Awareness Month, which ended last Tuesday, Nov. 30. This year, the Pulmonary Hypertension Association (PHA) encouraged the PH community to Spark Awareness about PH and its associated conditions throughout November.
PHA Offers New Research Grant
The Pulmonary Hypertension Association (PHA) is accepting applications for its new Innovation Research Award. The award supports new areas of pulmonary hypertension research that couldn’t have been explored without PHA funding. Any areas of innovative pulmonary hypertension research will be accepted. Up to $60,000 a year for two years is available.
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.
Junior Investigators: Make an Impact on PAH Research
The Pulmonary Hypertension Association is offering a two-year grant for junior investigators interested in pulmonary arterial hypertension (PAH) research. The Aldrighetti Award for Young Investigators, supported by a partnership with Janssen Pharmaceuticals, covers salaries and/or supplies up to $40,000 each year.
PHA Journal: How PAH Affects Organs, Obesity, Other Diseases
The latest issue of Advances in Pulmonary Hypertension addresses pulmonary arterial hypertension (PAH) as a systemic disease. “Even in its purest form, the idiopathic or hereditary PAH, the rest of the body is affected when various organs begin suffering from inadequate perfusion, initially with exertion, then even at rest,” says guest editor Ioana R. Preston, M.D. “Even in its purest form, the idiopathic or hereditary PAH, the rest of the body is affected when various organs begin suffering from inadequate perfusion, initially with exertion, then even at rest,” says guest editor Ioana R. Preston, M.D.
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