PHA News – for patients, families, caregivers, and healthcare professionals
The Right Heart
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.
Living in the Moment With New Lungs
A month before Genevieve Hughes turned 50, severe shortness of breath forced her to seek emergency treatment. “I thought I was just getting older and out of shape,” says Genevieve, who later learned she had idiopathic pulmonary arterial hypertension and eventually would need a double-lung transplant. Now two years post-transplant, she’s breathing deeply and enjoying her gift of life.
PH Changed Her Life. It Taught Her to Persevere
Diane Ramirez of Lexington, North Carolina, was diagnosed with pulmonary arterial hypertension in 1987. At the time, fewer than 200 cases were known of the disease then known as primary pulmonary hypertension (PH). Diane originally shared her PH journey in the December 2020 Pathlight magazine, which launched the Pulmonary Hypertension Association’s 30th anniversary celebration.
Post-Transplant Life is Tough. But This Teen Feels Blessed
Sarah Donoughue was terrified in 2018 when her care team suggested a lung transplant. Three years later, the 17-year-old Texan says she is living, loving and thriving at life. She shares her transplant journey for Donate Life Month in April.
Reenergized and Holding on to Hope
In 1966, 8-year-old Laura Hooley underwent surgery to repair a congenital heart defect. The surgery allowed her to play volleyball, ski and enjoy relatively good health. But her CHD eventually led to pulmonary hypertension. For American Heart Month, she shares what gave her new hope.
Featured News
Innovation for an Independent Life
Software developer Shavini Fernando invented a wearable device to continuously monitor oxygen saturation to help herself and other people with pulmonary hypertension. Her story originally appeared in the June 2021 issue of Pathlight, the Pulmonary Hypertension Association’s quarterly member magazine.
Do You Have What it Takes to Help Others? Volunteer for our Support Line
Share your strength and empathy with other members of the pulmonary hypertension community. The Pulmonary Hypertension Association (PHA) needs compassionate volunteers to take calls on its support line, an invaluable service PHA has provided since 1995.
Michigan Man Honors Optimistic, Spirited Wife
John and Sandy Awood were planning a big bucket list trip in 2007: An excursion to Egypt with a boat trip up the Nile to see historical sites along the way. Later that year, they canceled the trip after Sandy was diagnosed with pulmonary arterial hypertension. John remembers his wife’s fighting spirit by supporting the Pulmonary Hypertension Association.
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.
Advocacy Day to Kick Off PHPN Symposium
Allied health professionals, nurses, physicians and researchers: Join us Sept. 30 to advocate on behalf of the pulmonary hypertension (PH) community. Make virtual visits with congressional offices on Advocacy Day, which starts the Pulmonary Hypertension Association PH Professional Network Symposium.
PH Community Helps Win Connecticut Copay Accumulator Ban
State-regulated health insurance plans in Connecticut must count copay cards and other financial assistance toward deductibles and out-of-pocket maximums, thanks to the pulmonary hypertension (PH) community. The state law, enacted in June, is a major achievement for Connecticut residents with PH and other complex, costly health conditions.
How Can Wearable Technology Enhance PH Care? Find out in Pathlight magazine
The summer issue of Pathlight magazine focuses on pulmonary hypertension (PH) research. This issue of the Pulmonary Hypertension Association member magazine features focuses on research advancements, technology innovations and the importance of patient participation in clinical trials and studies. The cover story, “Innovation for an Independent Life,” by Shavini Fernando, discusses her PH journey and the device she invented to continuously monitor oxygen saturation.
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.
PHA Journal Examines Group 5 PH
The summer issue of Pathlight magazine focuses on pulmonary hypertension (PH) research. This issue of the Pulmonary Hypertension Association member magazine features focuses on research advancements, technology innovations and the importance of patient participation in clinical trials and studies.
Career Focus: Longtime Commitment to PH Treatment
Stuart Rich, M.D., was a cardiology fellow at the University of Chicago in 1978 when he began treating pulmonary hypertension (PH). Now retired from Northwestern Memorial Hospital, Dr. Rich has seen many changes with PH treatment and awareness. He’s also had many memorable experiences.
New Video: Visiting a Genetic Counselor
View our latest video on Visiting a Genetic Counselor. Emily Griffin, M.S., C.G.C, of Columbia University Irving Medical Center explains what to expect in a genetic counseling session and how to prepare for an appointment.
CEO Update: Going for the Gold in All We Do
Here’s another reason to be proud of the hard-working Pulmonary Hypertension Association staff: We recently won two EXCEL awards for outstanding communications and marketing efforts. Our 2020 Pulmonary Hypertension Awareness Month: disCOVER PH campaign, received a gold award for advocacy/awareness campaigns. We also received a bronze award for our 2020 COVID-19 pandemic response.
Register for PHPN Symposium by July 7 for Early Discount
Register for this year’s PH Professional Network (PHPN) Symposium by July 7 to save up to $300 on registration. PHPN Symposium, “PHiguring Out the Puzzle: Pieces to Innovative, Patient-Centered Care,” will take place online Sept. 30 through Oct. 3. Join other allied health professionals to network, learn about PH research and care advancements, and earn continuing education credit.
Missed Our COVID-19 Task Force Q&A? Watch the Recording
Members of the Pulmonary Hypertension Association (PHA) COVID-19 task force answered questions about pandemic issues in a May 27 webinar, including vaccine myths. Cardiologist Mardi Gomberg, M.D., M.Sc., of the George Washington University School of Medicine and Health Sciences, explained how the vaccines work as part of the event.
U.S. Connects Digitally for World PH Day
In May, the Pulmonary Hypertension Association (PHA) joined 80 pulmonary hypertension (PH) organizations to raise awareness for World PH Day. This year, PHA launched a new social media campaign, “Together, We Can Fight COVID-19.”
Scholarships Available for California Summer Camp
Children with pulmonary hypertension (PH) can apply to attend a special summer camp for free. Up to six campers annually will receive fully paid scholarships to attend Camp del Corazon on Catalina Island Aug. 30 through Sept. 3.
Medtronic, United Therapeutics Halt ISR development
Medtronic and United Therapeutics have terminated development of the Implantable System for Remodulin (ISR). United Therapeutics will continue to support clinical study participants who use the ISR. United Therapeutics and Medtronic have committed to continue supporting patients currently on the ISR. They will evaluate the feasibility of making replacement pumps available for current ISR patients if and/or when necessary. Learn more.
McGraw Family: Making a Difference for 3 Decades
Terry and Tom McGraw initially joined the fledging Pulmonary Hypertension Association (PHA) to find answers. Thirty years later, they’re entrenched in the pulmonary hypertension community as longtime volunteers and fundraisers. Discover their story as part of PHA’s 30th anniversary.
Enter the PHA 2022 Theme Contest
Help the Pulmonary Hypertension Association (PHA) come up with a theme for PHA 2022 International PH Conference and Scientific Sessions. If PHA chooses your idea, you could win a $25 Amazon gift card, a one-year PHA membership and PHA swag. PHA 2020 begins a year from today in Atlanta. The contest closes Wednesday, June 30, so enter today. We will announce the winner by July 31.
Family Affair: 30 Years of Volunteering
Terry and Tom McGraw are among the families who have lived with pulmonary hypertension (PH) for many years – in their case, decades. In the early 1990s, when Terry was diagnosed, little information was available about PH, and the McGraws didn’t find the fledgling Pulmonary Hypertension Association (PHA) for about five years. Initially, they got involved to find answers and eventually became volunteers and fundraisers. The McGraws initially shared their story with Pathlight, PHA’s member magazine, in connection with PHA’s 30th anniversary.
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,
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.
FDA Approves First Drug for Group 3 PH
The FDA recently approved Tyvaso (treprostinil) Inhalation Solution to improve exercise ability for people who have PH associated with interstitial lung disease. Manufactured by United Therapeutics, Tyvaso is the first FDA-approved treatment for Group 3 PH.
PHA Names Research Award Recipient
Vineet Agrawal, M.D., Ph.D., is the 2020 recipient of the Pulmonary Hypertension Association’s Aldrighetti Research Award for Young Investigators. Dr. Agrawal is a physician-scientist and instructor of medicine at Vanderbilt University Medical Center.
How Does Body Weight Affect PAH?
A new article based Pulmonary Hypertension Association Registry (PHAR) data suggests body weight plays a complex, important role in pulmonary arterial hypertension (PAH). The article, which recently was published in the Annals of the American Thoracic Society, investigated the effects of patient weight on day-to-day activities.
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