PHA News – for patients, families, caregivers, and healthcare professionals
The Right Heart
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.
Spreading PH Awareness for 20-Plus Years
Elise Zwicky’s greatest fear at diagnosis was that she wouldn’t see her children grow up. More than 20 years later, she has hope that she and her husband will grow old together, watching their grandchild grow up.
Determined To Be Defined by More Than PH
The past 23 years have shown Dawn Meador how strong she is. Since her 1998 diagnosis, she’s learned much about herself and how to appreciate little things. Dawn, of Suffolk, Virginia, shares her long-time pulmonary hypertension journey for the Pulmonary Hypertension Association’s 30th anniversary.
Familial PAH Diagnosis Prompts Need to Give Back
Kayla Naecker had classic signs of pulmonary hypertension (PH), a disease that killed her biological grandmother. But Kayla, of Benld, Illinois, didn’t suspect PH. She was in her 20s, and her grandmother’s case was thought to be associated with diet pill use. Genetic testing after a right heart catheterization confirmed familial PAH, so Kayla had her 3-year-old daughter tested, too. Kayla shares her story with the Pulmonary Hypertension Association’s Right Heart Blog for American Family Month.
Thankful for Treatment Advancements That Give Hope
Pulmonary hypertension (PH) was no stranger to Albert Wright when she was diagnosed in 2018. Her oldest sister and a niece died from it. But Alberta lives life to the fullest, taking nothing for granted. She leads the Pulmonary Hypertension Association’s Detroit Support Group and administers a PHA Facebook support group page. A full-time teacher’s aide, she shares her PH journey with PHA’s Right Heart Blog for National Family Month in June.
Featured News
New Protections Against Surprise Medical Bills Now in Place
The No Surprises Act took effect Jan. 1, thanks to the pulmonary hypertension and rare disease communities. The law applies to people with employer-provided or individual health insurance, such as marketplace plans. It protects them from being billed for out-of-network care in situations where they can’t choose providers, such as emergency care.
Learn About the PH Drug Discovery and Clinical Trial Process
New videos are available from the Pulmonary Hypertension Association about the process of developing safe, effective pulmonary hypertension treatments. The videos are designed to help viewers understand the process to bring new treatments to consumers.
PHA Offers Copay Assistance Resource Center
This year is off to a difficult start for people who seek financial assistance for pulmonary hypertension (PH) treatment. For much of December and January, PH copay assistance grants have been closed. The Pulmonary Hypertension Association is monitoring the funds daily and will notify the community when the funds reopen.
O2breathe Fundraising Walks Return
Mark your calendars for new events to bring together the pulmonary hypertension community and raise money. The Pulmonary Hypertension Association is planning O2breathe events to support its patient and caregiver services, education programs and research initiatives.
Join PHA’s Fight to End PH Therapy Barriers
As the 117th session of Congress continues in 2022, the Pulmonary Hypertension Association (PHA) is keeping pressure on legislators to improve the lives of people affected by pulmonary hypertension. PHA’s advocacy can’t be successful without the PH community. Learn about three PHA legislative priorities and how to join the fight.
Renew or Join PHA Now to Apply for PHA 2022 Scholarships
If you plan to attend the Pulmonary Hypertension Association (PHA) 2022 International PH Conference and Scientific Sessions, it’s a good time to join PHA or renew your membership. Membership is required to apply for scholarships and receive discounted conference rates. For patients and caregivers, the $15 annual PHA membership rate saves at least $85 in registration fees. PHA 2022 is set for June 10-12 in Atlanta.
CEO Update: Sky’s the Limit for PHA Programs and Services in 2022
The beginning of a new year is always an exciting time. For me, 2022 marks the start of my second year at the Pulmonary Hypertension Association (PHA). When I joined PHA, my No. 1 goal was to ensure that patient care was at the center of our activities.
Finding Hope and Inspiration Among Peers
Mesha Guilloty wasn’t diagnosed with pulmonary hypertension (PH) until a decade after her symptoms began. Mesha’s story originally appeared in the December 2021 issue of Pathlight, PHA’s member magazine.
PHA 2022 Safety Preparations Underway
As we prepare for PHA 2022 International PH Conference and Scientific Sessions, the Pulmonary Hypertension Association has updated its safety precautions related to the COVID-19 pandemic. The conference is set for June 10-12 at the Hyatt Regency in Atlanta.
Catch Up on Our Webinar Series
View the Dec. 8 PH and HIV webinar, which addresses cardiovascular disease related to longer life expectancy among people with human immunodeficiency virus. Plus, get links to all 2021 webinars.
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.
Lighting the Way Forward for PH Support and Treatment
As 2021 wraps up, the Pulmonary Hypertension Association reflects on our 30th anniversary and looks to the future. This year, we celebrated the vision of four women who formed what would become PHA We marked our 30th anniversary by Lighting the Way Forward, sharing milestones, stories and visions for the future.
Read 6 Inspiring Stories of Living and Thriving with PH in December Pathlight
By now, Pulmonary Hypertension Association members should have received the December issue of Pathlight. The December 2021 issue explores living with PH, with inspirational stories from people who have made positive changes in their lives since their pulmonary hypertension diagnoses.
Share Your PH Story or Research at PHA 2022
The Pulmonary Hypertension Association is seeking speakers for PHA 2022 International PH Conference and Scientific Sessions. People with pulmonary hypertension, family members and caregivers may submit applications to present breakout sessions. Health care professional can submit abstract or symposia proposals for the Scientific Sessions. Applications are due Jan. 4.
Top 10 PHA News Stories of 2021
What were the most popular PHA News stories in 2021? Hint: Many were research-related. We’ve included links to the top stories in case you missed them the first time around
Top Social Media Posts of 2021
Thank you for sharing Pulmonary Hypertension Association (PHA) social media posts. Your tweets, likes and shares helped determine our most popular social content in 2021.
Make PHA the Charity of Choice Before Year End
Consider an end-of-year gift to the Pulmonary Hypertension Association (PHA). With your help, PHA can continue its lifesaving work in 2022. PHA works tirelessly to provide critical services the PH community needs. During an especially challenging year, PHA has provided critical support and education programs and advanced quality care and research.
Act Now for Seamless Treatment Access in January
Is your insurance coverage changing in January 2022? If so, follow these three steps to avoid treatment delays, such as prescription refills or prior-authorization renewals.
Make an End-of-Year Gift to PHA
Georgette Bridger learned that caregiving is more than patient care. She helps her husband Dean manage his pulmonary hypertension, learn about treatment advancements, advocate for himself, and take advantage of Pulmonary Hypertension Association support services. Join the Bridgers in making an end-of-year donation to PHA.
Your GivingTuesday Donations Set New Record
Thanks to the generosity of the pulmonary hypertension community, the Pulmonary Hypertension Association raised a record $120,955 in donations Nov. 30 on GivingTuesday. The amount was nearly $20,000 higher than the total from GivingTuesday 2020.
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.
World PH Day Raises Awareness of Pulmonary Hypertension’s Global Impact
Members of the world PH Community will come together May 5 to share their stories,
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,
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.
Missed Our Research Room Webinar? Here’s Our Recap
A recent Pulmonary Hypertension Association (PHA) webinar unveiled learnings from six studies conducted at PHA 2108 International PH Conference and Scientific Sessions. Doctors shared updates about the studies in the July 29 PHA Live webinar “PHA Research Room Findings.” More than 200 patients and healthy subjects participated in Research Room 2018, sharing data and biological samples with 10 research teams.
Learn Findings from the 2018 PHA Research Room
Join the Pulmonary Hypertension Association (PHA) at 3:30 p.m. EST Thursday, July 29 for “PHA Research Room Findings.” Hear from scientists and clinicians about Research Room study findings from the 2018 PHA International PH Conference and Scientific Sessions.
Study: PH Support Groups Are Good for Your Health
Your support group participation might improve your life more than you realize. A recently published study shows that support groups improve meaningful health-related outcomes, such as self-care, pulmonary hypertension symptom management, medication adherence and understanding related medical procedures.
Thanks to Our Sponsor
Interested in advertising?
PHA offers various advertising and sponsorship opportunities on PHANews.org for companies and non-profit organizations. Please contact AzaleaC@PHAssociation.org for more information.