Pathlight - Spring 2024

A publication of the Pulmonary Hypertension Association

2024 // Volume 34 // No. 1

PHCCS: 10 YEARS OF QUALITY CARE PLUS CONNECTION AND SUPPORT

THROUGH GAMING PHYSICIAN AS PATIENT

STAGESTRUCK

Balancing Performance And PH

WHY YOU SHOULD ATTEND PHA 2024

Life With PAH Can Be Challenging.

Learning About PAH Shouldn’t Be. Join a free, educational webinar in the comfort and safety of your home The Navigating PAH Pathways program offers free webinars created specifically for patients and caregivers, all led by a PAH Practitioner and sponsored by Janssen.*

Find Answers

Learn Why

Get Talking

Hear an educational presentation from a PAH Practitioner on topics that may be important to you.

Understand more about PAH, the 3 key treatment pathways, and tools to help you track your PAH

Discover how to have more informed conversations about PAH with your care community.

Webinars are available at various dates and times so you can register for one that best fits your schedule.

Register today at PAHregister.com or call 1-888-370-8111 Your PAH healthcare team should always be your main source of information. This program is not intended to provide medical advice or address specific medical concerns.

All webinars are viewed on a computer; internet access required.

PAH=pulmonary arterial hypertension. * The speaker is a paid consultant presenting on behalf of Janssen Pharmaceuticals, Inc., and must present information in compliance with FDA requirements applicable to Janssen Pharmaceuticals, Inc.

This program is sponsored by Janssen Pharmaceuticals, Inc. ©2022 Actelion Pharmaceuticals US, Inc. All rights reserved. cp-201358v2 02/22

IN THIS ISSUE 2024 // VOLUME 34 // NO. 1

6 Register for PHA 2024

6

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Invaluable Reasons To Attend PHA 2024

10 8 Fun Reasons To Visit Indianapolis 12 Breathe Easier By Planning Ahead for Oxygen Travel Needs 14 26 Years Since Diagnosis, Doctor Powers Through PH 17 Find Empowerment Through Advocacy for World PH Day

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18 Stagestruck: Behind the Scenes of Performing With PH 24 Connection and Support Through Gaming

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27 Calling all Texans! Join Us for Houston Workshop and Walk 28 PHCCs Celebrate 10 Years of Quality Care 32 Michigan Students Honor Classmate with Donation

ON OUR COVER 27

32

Steve Smith thought PH meant his musical theater days were over. In “Stagestruck,” he shares how he balances performing and PH. Story by Jenny Errico. Photography by Jesse Quinlin.

IN EVERY ISSUE 5

Letter From the Chair

33 Calendar 35 Passages

PHASSOCIATION.ORG 3

PUBLISHER

BOARD OF TRUSTEES

Matt J. Granato (he/him) President & CEO

Officers Tony Lahnston, chair Traci Stewart, RSN, CSN, CHFN, chair elect Nicole Creech, treasurer Colleen Connor, secretary Colleen Brunetti, MEd, CHC, immediate past chair Matt J. Granato, LLM, MBA, president and CEO, ex officio

STAFF Linda Busche (she/her) Editor-in-Chief Karen Smaalders (she/her) Vice President, Communications and Marketing

CONTRIBUTORS

Trustees

Jenny Errico, Angela Golden, Haley Johnson, Pat Reilly, Abby Sickles, Jaeger Spratt, Ann Socolofsky, Sarah Smith. Cover story images: Photography by Jesse Quinlin.

Submissions to Pathlight are welcome.

Please email your articles, photos and queries to Communications@ PHAssociation.org.

Todd Bull, MD, Scientific Leadership Council chair elect Murali Chakinala, MD, FCCP, Scientific Leadership Council immediate past chair Ramona Doyle, MD, MSc Anna R. Hemnes, MD, Scientific Leadership Council chair Kimberly Jackson, RN, BSN, PH Professional Network chair Mitch Koppelman, PhD Michelle Ferdinand Liu, MD, MPH, FAAOA Mike Lentz Melissa Magness, MSN, APRN, CNP-AC, PH Professional Network chair elect Mike Naple Monica M. Penaranda Diane Ramirez Doug Taylor Matt Wall Delphine Yung, MD, Accreditation and Registry Committee chair

HEADQUARTERS

Emeriti ex officio

1629 K St. NW, Suite 300 Washington DC, 20006

C. Gregory Elliott, MD, FCCP, MACP Michael D. McGoon, MD Edwin Simpson Judith Simpson, RN, EdS

Mary Beth Ramsey (she/her) Graphic Design

CONTACT 301-565-3004 PHAssociation.org

SUPPORT LINE 800-748-7274 We’re here to support anyone with a connection to PH. (Daytime, please.)

BILLING AND MAILING ADDRESS 8401 Colesville Road, Suite 200 Silver Spring, MD 20910

Honorary Carl Hicks PH PROFESSIONAL NETWORK EXECUTIVE COMMITTEE Kimberly Jackson, RN, BSN, chair Cheri Abbott, RN, CCRP April Blakley, RN, BSN Jessie Dunne, PharmD, BCPS, BCCP Loida A. Johnson, CRNP Tisha Kivett, RN, BSN Melissa Magness, MSN, APRN, CNP-AC, chair-elect

SCIENTIFIC LEADERSHIP COUNCIL Anna R. Hemnes, MD, chair Todd M. Bull, MD, chair-elect Murali M. Chakinala, MD, FCCP, immediate past chair Eric D. Austin, MD, MSCI Sonja Bartolome, MD Vinicio A. de Jesus Perez, MD, FCCP Teresa De Marco, MD Ankit A. Desai, MD, FACC, FAHA Jeffrey Fineman, MD Robert P. Frantz, MD Mardi Gomberg-Maitland, MD, MSc Daniel Grinnan, MD Gustavo A. Heresi, MD, MSci Kristin B. Highland, MD, MSCR Nicholas Kolaitis, MD, MAS Matthew R. Lammi, MD, MSCR Peter Leary M.D., PhD Deborah J. Levine, MD Wes McConnell, MD Lana D. Melendres-Groves, MD Josanna Rodriguez-Lopez, MD John J. Ryan, MD, MB, BCh, BAO Sandeep Sahay, MD Thenappan Thenappan, MD Anjali Vaidya, MD, FACC, FASE, FACP Nidhy Varghese, MD Corey E. Ventetuolo, MD, MS R. James White, MD, PhD Distinguished Advisers David B. Badesch, MD Erika S. Berman Rosenzweig, MD Bruce H. Brundage, MD Richard Channick, MD C. Gregory Elliott, MD, FCCP, MACP Karen A. Fagan, MD Michael D. McGoon, MD Vallerie V. McLaughlin, MD Ron Oudiz, MD

LETTER from the

CHAIR Dear PHA Community, I have enjoyed many PHA conferences over the years. My first PHA International PH Conference and Scientific Sessions was in Houston in 2008. Our family had recently suffered through the loss of my niece in 2007, and this was my first opportunity to meet the pulmonary hypertension community in person.

I came to that conference hopeful, but a bit fearful of the unknown. I quickly felt a very warm welcome from the PHA staff and the many patients I met over the next few days.

It’s hard for me to describe exactly how I felt that weekend but, in the end, I knew with such conviction that I needed and wanted to be a part of this community in any way that would benefit PHA and its patients.

And here I am, 16 years later, as the chair of PHA’s Board of Trustees. I am humbled and honored to be part of a strong community, pushing for a cure.

This year, we’ll be in Indianapolis Aug. 15-18 for PHA 2024. You can learn about what to expect on Pages 6-11 in our PHA 2024 conference preview.

Registration opens March 29, so make sure your membership is up to date through the end of the conference.

One of the most valuable benefits of PHA membership is discounted conference registration. If you’re a first-time attendee who needs help paying for registration, you might qualify for a scholarship or stipend. The scholarships pay for registration fees, and some travel expenses for adults and children with PH as well as caregivers. There’s even a scholarship for people with PH from outside the US. If you’re PHA volunteer, you could qualify for a stipend, which covers your conference registration, but not lodging or travel expenses. You must be a current PHA volunteer, be willing to volunteer at PHA 2024 and attend our volunteer appreciation breakfast at the conference.

Make sure to register at PHAssociation.org/PHA2024 as soon as you receive your Pathlight. PHA’s Scholarship Committee awards scholarships on a first-come, first-served basis, as funds are limited.

As we plan PHA 2024, we’re also working on several important events this spring. Don’t miss our next PH Community Workshop and fundraising walk in Houston.

You can find out more on Page 27.

Additionally, we’re getting ready for World PH Day on May 5. One of the most important things you can do is sign up for our virtual advocacy day, to get the word out about important legislation that affects people with PH. You’ll need to sign up by April 10, so PHA can work with lawmakers’ offices to schedule your virtual visit. Learn more about this event on Page 17.

Please join me, the PHA staff and volunteers, our supportive health care professionals, other people with PH, caregivers and the rest of the PHA Board of Trustees at PHA 2024 in Indianapolis. It will be a great event, because as the conference theme reflects, we are, without a doubt, stronger together.

All my best,

Tony Lahnston Chair, Pulmonary Hypertension Association Board of Trustees P.S. On a sad note, PHA learned at press time that a key member of the PH research community has died. John Hughes Newman, MD, was part of the team that discovered a gene for pulmonary hypertension. The team found that mutations in the BMPR2 gene caused most heritable pulmonary artery hypertension cases and was a major breakthrough in understanding, diagnosing and treating PAH. Newman, a retired physician-scientist from Vanderbilt University Medical Center, was a distinguished adviser to PHA’s Scientific Leadership Council. PHA mourns his loss and celebrates his contributions to PH research.

PHASSOCIATION.ORG 5

PHA 2024

Register Now for

PHA 2024

JOIN US in Indianapolis for PHA 2024 International Pulmonary Hypertension Conference and Scientific Sessions. Online registration opened March 29 for the event, which takes place Aug. 15-18.

6 PATHLIGHT

PHA 2024

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or people with pulmonary hypertension and health care professionals, PHA 2024 presents an opportunity to connect, celebrate and learn about advances in PH research. Themed “Stronger Together,” PHA 2024 refers to the strength of community, whether you’re newly diagnosed, long-term survivors, caregivers or professionals.

Education sessions targeted at patients and caregivers will focus on diagnosis, treatment and skills to cope and improve quality of life.

Coupled with support group sessions to foster relationships and connection, and a fashion show and party Saturday night, PHA 2024 aims to provide a family-friendly atmosphere while presenting information about the latest PH treatments and care.

New this year is an interactive community service project and a silent auction that will replace the art gallery.

Coming from outside the U.S.?

PHA is reviving the international reception to connect with global members of the PH community.

Popular returning features include the Kids Room and a field trip. The Kids Room, for attendees aged 3 to 17, will be open on Friday and Saturday.

Kids who participate in the field trip on Friday will go to the Indianapolis Children’s Museum, which includes a

dinosaur exhibit, playscape and more.

The Wall of Hope will return for attendees to honor family and friends who have died from PH. Health care professionals and the patient community come together to enjoy meeting one another and networking at six inspiring general sessions.

In the scientific sessions, health care professionals can earn CME/CMU credits Aug. 15-17; engage patients in their research in the Research Room and network with colleagues.

The scientific sessions will present recent advancements in research and treatment, including a recap of the World Symposium on Pulmonary Hypertension, which takes place in June in Barcelona.

With an anticipated 1,400 attendees, PHA 2024 will help you find community, feel heard and show that you’re not alone.

Register today at PHAassociation.org/ PHA2024.

Need help paying for registration?

Apply for a scholarship when you register. Scholarships pay for registration fees and some travel expenses for patients and caregivers. PHA’s Scholarship Committee awards scholarships on a first-come, first-served basis, as funds are limited. Your PHA membership must be valid through Aug. 18, 2024, to apply for a scholarship. Renew your membership or become a PHA member at PHAssociation.org/join.

PHASSOCIATION.ORG 7

PHA 2024

Finding Hope And Other Invaluable Reasons To Attend PHA 2024

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ancy Zeppa was overwhelmed with joy at her first PHA conference in 2022. She didn’t expect to be around so many people who understood exactly what she was going through.

“I didn’t have to explain the disease all the time, I got to just be a person and connect,” Zeppa from Burlington, New Jersey said.

Diagnosed in 2019, Zeppa wanted answers. She planned on attending PHA 2020 in Anaheim, but due to COVID-19, it was canceled. Because PHA 2022 was going to be on the East Coast, in Atlanta, Nancy and her husband saw it as a sign to go.

‘There’s nothing worse than feeling alone and lost.

Conference can help you see you’re not. ... I guarantee it will be a worthwhile experience.’

STEPHEN CARTER-HICKS

LEARNING CURVE

Similarly, Leslie Polss had never met anyone else with PH when she was diagnosed in 2003. Since then, she has attended seven PHA conferences.

She registered for PHA 2004 after coming across it on Google to learn more about her diagnosis.

“I found support. I gained a lot from interacting with patients and finding out how they handle their PH,” Polss from Westchester, Pennsylvania, said.

“There’s the community there that makes you feel understood.”

At PHA 2004, someone invited Polss to join a support group. She felt 8 PATHLIGHT

skeptical about it at first but joined her local support group when she got home.

Five years later, she became the coleader, a role she still has today.

“That was a new opportunity I would’ve never been exposed to without conference,” Polss said.

As Polss transitioned to long-term survivor from newly diagnosed, she has served on panels at PHA conferences, sharing coping advice and “giving back to newbies.”

“I was there once, scared and worried just trying to learn about my diagnosis,” Polss said. “That’s why I go [to PHA conferences] now: to provide that information for the community and bring some ease to people.”

LIFELONG CONNECTIONS

Like Polss, Gary Bruce has attended many PHA conferences. At his first conference in 2016, he met Debra Hines, whom he married a year later.

PHA 2024

Today, they lead PHA’s Dallas support group and attend conferences together.

At PHA 2016, Hines and Bruce happened to sit at the same table for breakfast one morning, and Hines shared her PH story. Bruce spent the rest of the day trying to find her again.

He thought hope was lost, until Hines tapped him on the shoulder and said, “How are you? I’ve been looking for you all day.”

Bruce’s first conference will always be his favorite because of meeting Debra, but also because of the friendships he made.

“I didn’t have a lot of support, and I never realized how many patients there were, so it was an emotional time,” Bruce said. “It opened my eyes to the disease.”

Over the years, Bruce remembers feeling more control of his PH as he learned about new PH treatments and networked with doctors at PHA conferences.

At PHA 2022, Hines and Bruce participated in support group meetings and shared their story in a breakout session. Bruce said they like to remain active to help the community.

“You should go to conference to meet other patients with different stories, different ways of maintaining their medications and compare notes on each other’s PH journey,” Bruce said. “Especially if you’re newly diagnosed, there’s a lot of information and education to help you better understand the road you’re on.”

Bruce has applied for scholarships or stipends for every conference he’s attended. He said the process was manageable because it was part of the conference registration process. As a support group leader, he’s eligible

to apply for stipends that cover his registration fee.

“I wouldn’t have gone to any conference without the financial support. It truly helps curb some of those burdens and allows some relief,” Bruce said.

Bruce and Hines hope to attend PHA 2024 but are waiting to see if Hines can take time off from her job.

“Every year is something different,” Bruce said. “One year I learned how to maintain my oxygen supplies; another year showed me how to volunteer for clinical trials. Each time, in that environment with other patients, you feel less alone. There are hundreds of people from across the country ready to connect.”

‘I didn’t have to explain the disease all the time, I got to just be a person and connect.’

NANCY ZEPPA

SPARK OF HOPE

Although Stephen Carter-Hicks is highly engaged in the PH community today and always ready to help with PHA events, he once felt alone.

He felt isolated and scared in his first few years of diagnosis but felt blessed for the support he received from his medical team and family.

“I was lucky because I had a great doctor who gave me hope, but not everyone has that,” Carter-Hicks said. “I want to be that helpful voice who gives information and shows that you can live with this disease. You will be okay.”

Carter-Hicks recommends new patients attend PHA 2024 to find community, support and especially answers to their questions about PH. “There’s nothing worse than feeling alone and lost. Conference can help you see you’re not. From the connections you make, the stories you hear and the information you learn, I guarantee it will be a worthwhile experience.”

‘You should go to conference to meet other patients ...and compare notes on each other’s PH journey.’

GARY BRUCE

PHASSOCIATION.ORG 9

PHA 2024

Considering tacking on a few days to your trip after the PHA 2024 International PH Conference and Scientific Sessions?

Here are eight reasons to extend your stay in Indianapolis:

1. LOCATION, LOCATION, LOCATION.

Indianapolis is within a day’s drive of more than half the U.S. population. If you’re flying, the Indianapolis International Airport is just 15 minutes from downtown. Airports Council International has named it the best airport in North America for the past 11 years.

2. FOODIE DESTINATION. Explore

downtown Indy’s lively food scene, including trendy bistros, classic steakhouses, farm-to-table eateries and global flavors. Discover burger bars, vegan diners, delis and familyfriendly fare, plus three vibrant food

halls: Indianapolis City Market, the Garage at Bottleworks and AMP at 16 Tech Innovation District.

3. CRAFT BEER, WINE AND SPIRITS.

Indy’s breweries, wineries and distilleries are gaining notice for innovative flavors and styles. In 2022, USA Today named Indiana among its top American beer destinations. Visit Indy, the city’s visitors bureau, offers the Indy Craft Pass to explore the craft scene while receiving rewards such as stickers, t-shirts, koozies and beer steins.

FUN REASONS TO VISIT

Indianapolis 10 PATHLIGHT

PHA 2024

4. OUTDOOR ATTRACTIONS. White

6. EITELJORG MUSEUM OF

River State Park, Indiana’s largest urban state park, is a short walk from the JW Marriott.

Spanning 250 acres, the park’s walking and biking trails connect you to museums and attractions (see Nos. 5 and 6).

Explore the city’s Central Canal by pedal boat or kayak

AMERICAN INDIANS AND WESTERN

5. INDIANA STATE MUSEUM. The

Indiana State Museum, located in White River State Park, features three floors of galleries. The museum’s collections and exhibits focus on Indiana art, science and culture from ancient times to modern day.

Interested in architecture? The museum was built from Indiana limestone and sandstone. Sculptures on the outside walls represent the state’s 92 counties.

ART. Next to the Indiana State

Museum, the Eiteljorg is one of two museums East of the Mississippi that features native and Western collections. See traditional and contemporary works by T.C. Cannon, Andy Warhol, Georgia O’Keefe and other well-known artists.

7. INDIANAPOLIS CHILDREN’S MUSEUM. Dive into a world of fun

and learning at the Children’s Museum of Indianapolis.

With five levels of interactive exhibits and 120,000 artifacts, the Children’s Museum is a must-experience adventure for exploring art, science, history and culture. Don’t miss the antique carousel, the opportunity to dig for dinosaur bones or the 7.5-acree Sports Legend Experience playground. Kids who attend PHA

2024 can experience the Children’s Museum during the Friday, Aug. 16 field trip.

8. INDIANAPOLIS MOTOR SPEEDWAY.

Although the Indianapolis Motor Speedway Museum is closed for renovations, you can experience the Speedway through behind-thescenes track tours.

Find out more about these attractions and more at visitindy.com.

PHASSOCIATION.ORG 11

PHA 2024

Breathe Easier

By Planning Ahead for Oxygen Travel Needs

If you plan to fly to Indianapolis for PHA 2024 and you use supplemental oxygen, it’s not too early to plan ahead. Ensure a smooth journey to PHA 2024 International PH Conference and Scientific Sessions with these tips.

12 PATHLIGHT

PHA 2024

1

Tell your health care team about your trip ahead of

time. Discuss concerns about your supplemental oxygen during air travel or changes you might need. Depending on your care facility, your doctor might be able to order a high-altitude simulation test, which mimics the atmospheric pressure of a commercial airplane cabin. The test indicates how much oxygen you need at altitude, whether at rest or moving around the cabin.

Get a consent form to use a portable oxygen concentrator. You’ll need permission

2

from your doctor to use a concentrator, and you’ll need to show your airline the signed form. Some airlines accept only their specific forms, so check online.

Leslie Polss of Westchester, Pennsylvania, remembers her traveling experience to PHA 2004 as a mess.

She didn’t know about portable oxygen concentrators, so she rented oxygen through her airline, which was expensive and chaotic. Since PHA 2006, she has used a portable oxygen concentrator, which she says was much easier.

3

Research airline rules about oxygen before booking.

Oxygen tanks aren’t permitted on airplanes, and not all airlines allow portable oxygen concentrators onboard.

Check with your preferred airline before booking. If you use a portable concentrator, check the Federal Aviation Administration website to make sure yours is approved for use on commercial airlines. faa.gov/about/ initiatives/cabin_safety/portable_oxygen

4

Inform your airline. When

5

Contact the Transportation Security Administration.

booking your flight, tell the airline about needed accommodations like supplemental oxygen or wheelchair assistance. Airlines might require you to notify them 48 hours in advance and/or check in at least an hour before your flight so they can accommodate your oxygen needs. If possible, reserve a seat by the window to prevent your tubing or equipment getting tangled in the aisle.

When going through TSA with a concentrator, you will have to remove the concentrator and put it through the X-ray machine along with your other luggage or keep the concentrator on and wait for an agent to pat you down and inspect your concentrator and any mobility equipment.

6

Prepare for delays. Arrive

at the airport early to allow additional time to get through security. Arrive at your gate well before boarding. If you use a portable oxygen concentrator, bring enough batteries to provide power for one and a half times the expected flight duration (e.g., three hours for a two-hour flight). Look for an outlet or charging station at the gate to plug in your concentrator and spare batteries so they will be fully charged when you board the plane.

Call the TSA Cares Help Line (855787-2227) 72 hours before your flight.

Ask for a passenger support specialist to assist you at the TSA checkpoint.

PHASSOCIATION.ORG 13

Physician

AS PATIENT

14 PATHLIGHT

FEATURE

26 Years Since Diagnosis, Doctor Powers Through PH

ANN SOCOLOFSKY of Sioux Falls, South Dakota, was diagnosed with pulmonary hypertension in 1998. Now 65, she still works as a physician and is developing a coaching business to help women manage life-threatening illnesses like PH. Socolofsky has two sons, now in their 30s, whom she visits often in Kansas. Besides traveling to see family, Socolofsky walks a mile a day and recently joined a rock expedition club.

BY ANN SOCOLOFSKY

I

was a practicing family physician in 1998 when I was diagnosed with pulmonary hypertension.

At that time, I worked with a doctor training in pulmonology, and she told me what tests I needed to assess my shortness of breath.

After three or four months, we were convinced it was PH. When I went to a cardiologist for a right heart catheterization, he said it wasn’t PH and ordered a treadmill test instead. I was so happy for a week, but I nearly passed out during my treadmill test (a really bad idea for someone with PH).

The cardiologist then administered a right heart catheterization and diagnosed me with PH. ADAPTING TO NEW NORMAL

When I was diagnosed, I was newly divorced with children ages 7 and 9.

I had to change my work situation immediately because I couldn’t do the typical on-call regimen that most practices expected. This was before telemedicine and other flexible opportunities for physicians, so I had to create my own way to continue in medicine. I created a specialty practice and explored new opportunities as they came up.

Being a patient is a good way for doctors to understand the “other side of the stethoscope.” I diagnosed two cases of PH after I was diagnosed

because I understood the symptoms.

I think pulmonary hypertension is greatly underdiagnosed because the symptoms are so non-specific.

IDENTIFYING EFFECTIVE TREATMENT

Early on, I was lucky enough to participate in the original trials for Remodulin, and I’m still on subcutaneous Remodulin. The hardest part has been dealing with the site pain, which is sometimes severe.

Many doctors don’t put people on the subQ pump because patients don’t like dealing with the site pain, so I’m glad I had the opportunity to participate in the clinical trial. I am an anomaly whenever I go into the hospital because of the pump I use.

As different PH treatments emerged, I tried them because Remodulin worked so well for me, and I thought new treatments might work too. However, most of them made me very sick, except Adempas, which I’m currently on.

TREATMENT CHALLENGES

Changes to my treatment, like when drug manufacturers change how Remodulin is delivered, often worsen my quality of life. For example, the company that makes my pump decided to change pump styles by shortening the tubing from the site to the pump.

PHASSOCIATION.ORG 15

FEATURE

‘It is so easy to feel limited, but those with pulmonary hypertension or any chronic condition can find a way to push past that mindset and learn to live again.’

Now it’s going to completely change to a new subcutaneous system.

I researched the new system, and it will make my life more difficult. I will have to use a lithium battery and recharge the battery frequently. In contrast, I now just pop a new battery into my pump. Because of the frequent recharging, it’ll be harder for me to go camping or travel to places without electrical outlets.

I have been delaying switching over, but my current system is being eliminated. I’ll eventually be forced to change. Making a change like this and being forced to give up a portion of my freedom is mentally challenging.

I feel these companies make changes based on their business models rather than what fits patients’ lifestyles.

CAN-DO ATTITUDE

The key factor to manage treatment and other changes is determination.

When I was diagnosed, I noticed a trend among some people with PH and other medical problems, where someone would have a bad day and tell themselves, “I can’t do this (for example, I can’t walk a mile).”

Then, the next day they would walk a shorter distance, and each time they struggled, they responded by decreasing what they were doing. Their lives then become more and more limited.

16 PATHLIGHT

But I believe the way to stay active is to do some activity every day.

My goal is to walk one mile daily.

Sometimes that is just walking around my house (I have measured out a trail and use a pedometer).

When I’m feeling down or not in the mood, my approach is to think, “Wow, I can’t do a mile right now. I will take a break and then finish it. Or I will come back tomorrow and do it.”

I will find ways to make walking or any activity easier, such as walking with one of my sons, walking indoors or listening to music. It’s so important to focus on what I can do and not my limitations.

STAYING MOTIVATED

I always listen to and work with my body, but I also struggle to defeat that little voice in my mind that tells me I can’t do something. I have to push myself to avoid the easy way. The easy path is often a road to defeat.

I plan on pushing myself to find another personal trainer, as that has worked for me in the past, and joining a dance class that fits my activity level.

I have always wanted to look for rocks, so I joined a local group that does gold prospecting and rock hunting expeditions. Some members are older and have their own medical problems, so they are very tolerant of my limitations.

I’m also working on a new coaching program to help people manage lifethreatening diseases like PH, which includes ideas that have worked for me.

I created a four-part program that deals with emotional, physical and spiritual actions to improve one’s quality of life.

I also discuss environmental factors and how to navigate the health care system.

BEACON OF HOPE

I still do everything I want to do. I still practice medicine, mostly through telemedicine, and I stay active, either by myself or with the people I love.

My sons and I have taken classes in woodworking, cooking and pottery together. Even though they are grown now, we still find time to do things together. What means the most to me are the memories we are creating.

It is so easy to feel limited, but those with PH or any chronic condition can find a way to push past that mindset and learn to live again.

I always tell myself, “I can do anything anyone else can do. It might take me longer or I might have to find my own system, but I can do it.”

Perhaps my story can provide some hope for other people with PH.

ADVOCACY

Find Empowerment Through Advocacy For World PH Day

I

Above: Uraiwan Campbell.

Below: Wendy McBride.

nvite your legislators to be part of World Pulmonary Hypertension Day by educating them on what it’s like to live with PH. World PH Day is May 5, but you’ll need to set up your visit in early April.

One of the ways the Pulmonary Hypertension Association marks World PH Day is an advocacy campaign. Your PH story is the most persuasive tool when speaking to your member of Congress. Elected officials want to hear from their constituents.

You don’t need special experience to have an impactful legislative meeting.

PHA staff will guide you through the meeting process with training and talking points. PHA staff also can join your meeting as facilitators.

In 2023, advocates from 14 states met with legislators for World PH Day. Those meetings resonated with lawmakers.

Four days after Wendy McBride visited the office of Rep. Rick Allen (R-Ga.), Allen cosponsored the Safe Step Act. “It made me truly feel like one person, one small action in the grand scheme of things, could make a difference,” McBride said.

Uraiwan Campbell of Arizona was grateful for the opportunity to share her story with her senators’ offices.

“A year after my pulmonary arterial hypertension diagnosis … I have been looking for ways to tell my story. PHA provided me with the right audience.”

Holly Szmutko and Jeff Harpp of Indiana teamed up to meet virtually with staffers from Sen. Todd Young (R-Ind.). “Supporting and fighting for legislation like the Safe Step Act is quality of life changing,” Harpp said.

As a parent of a teen with PH, he said he was “prepared to give anything for even a slight quality of life improvement” for his son.

Join this year’s World PH Day advocacy campaign.

Contact PHA before April 10 to schedule your visits in May. Visit PHAssociation.org/ advocate#visit to sign up, email Advocacy@PHAssociation.org or call 301-565-3004, ext. 758.

PHASSOCIATION.ORG 17

STAGESTRUCK

COVER STORY

Behind the Scenes of Performing With PH

S

teve Smith has loved to sing since his youth. He acted and danced in high school and college, but singing is his passion. He participated in community and church choirs and sang the national anthem at local sporting events. And despite pulmonary hypertension, he’s still doing what he loves.

“I am a 61-year-old with a chronic condition,” says Smith, who was diagnosed with PH related to a congenital heart defect in 2018. “I always assumed my limitations would stop me from doing what I love, but not yet. With my care team, my family, my therapist and the support from my community, I can do what I love. I can push ‘not yet’ a little farther.”

In 2017, Smith’s community theater in Sterling, Colorado, performed Grease, a childhood favorite. He felt nostalgic and auditioned for a small role where he could dance, learn minimal lines and enjoy the costumes and production.

Two years later, he played Sam in Mamma Mia, another nostalgic production that reminded him of listening to Abba when he was growing up.

“That production was harder,” Smith says. “I was just diagnosed, and I didn’t yet know my limitations. I was still figuring out which medications worked, and [performing] was a lot.”

After Mamma Mia, Smith took on smaller roles so he could enjoy the thrill of performing but lessen the challenges of acting with PH. In 2022, the theater performed Chicago, and Smith felt emotional because he couldn’t participate, not even in a minor role.

“I was struggling going up the stairs, I was struggling with my medication adjustments, and I had to say no. I had to listen to my body.”

‘With my care team, my family, my therapist and the support from my community, I can do what I love. I can push “not yet” a little farther.’

PHASSOCIATION.ORG 19

COVER STORY

choreography. I was there just to help the scene flow, which was nice because I wasn’t exhausted on stage every night.”

The director also adapted Smith’s choreography, so he didn’t have to perform complex, exhausting moves.

MANAGING STRESS

Steve Smith performs as a singing minstrel in a production of “Something Rotten.”

RETURN TO STAGE

Smith attended the performance of Chicago to support the cast and ran into the director, who suggested Smith audition for Chitty Chitty Bang Bang in June 2023.

Wanting to be part of a familyoriented production, Smith auditioned for the Toymaker, a minor role. But he unexpectedly was cast as the lead, Caractacus Potts.

“I thought, ‘What on earth? I can’t do this,’” Smith says. “The director responded, ‘You can sing. You can act.

We will minimize the dancing for you.

You are the lead.’”

Chitty Chitty Bang Bang tested Smith’s physical and mental toughness.

Grappling with health issues, adjusting 20 PATHLIGHT

his medicine regimen and balancing a full-time job with a grueling rehearsal schedule challenged Smith, but his commitment and perseverance never faltered.

“I realized this production was going to be one of the greatest challenges since being diagnosed,” Smith says. “But my cardiologist, wife and cast mates kept saying, ‘You can do this.’ Then I thought, I can do this.”

Smith and the cast rehearsed four nights a week from 6-9 p.m. for three months. Sometimes, especially after a long day at work, Smith would assess whether he needed to modify that night’s rehearsal.

“Sometimes I would just read my lines as my castmates performed

In March 2022, Smith started therapy to find strategies to cope with his anxiety and fear of the unknown. He initially worried how he could handle all the pressure.

“I was initially resistant,” Smith says.

“But my cardiologist said, ‘You have a health condition. You’re dealing with anxiety. Talk to someone who can help you with those specifics.’”

Although the therapist isn’t part of Smith’s medical team, Smith considers him part of his care team. “He helped me through so much, including all my audition preparation.”

In addition to helping Smith prepare for his audition, Smith’s therapist worked with him to find coping strategies throughout rehearsals and performances, such as purposeful breaths. Every time Smith felt overwhelmed, he took three cleansing breaths to steady his heart rate and calm his anxiety.

Bells and whistles were used as sound props throughout the show, so during rehearsals, every time a bell or whistle went off, Smith would use those sounds as a cue to breathe. His breath centered him.

Smith said the four nights of performances preceded by three nights of dress rehearsal was the hardest part.

“I knew this was going to be the challenge. Scenes changed quickly, I had to change clothes quickly. There were times I thought ‘I don’t know if

COVER STORY

‘I realized this production was going to be one of the greatest challenges since being diagnosed, but my cardiologist, wife and cast mates kept saying, “You can do this.” Then I thought, I can do this.’

PHASSOCIATION.ORG 21

COVER STORY

fun everyone was having. Smith said he thought to himself, “Enjoy this because of them.”

Smith performed in a radio-version of A Christmas Carol in December 2023. He also sang two Broadway songs in a variety show at the college where he works.

Smith said he sings for the shared affirmations he receives from his audiences, and he loves seeing smiles on faces as he performs. He plans to audition for the theater’s fall musical.

UNEXPECTED DISCOVERY

Smith is thankful that his PH hasn’t prevented him from performing in musicals.

‘Enjoy this because of them.’

I can make it,’ in the sense of how I could get my heart rate back to normal and catch my breath.”

RENEWED CONFIDENCE

Above, Clockwise from top left: Mamma Mia, Chitty Chitty Bang Bang, Jersey Boys, Chitty Chitty Bang Bang.

22 PATHLIGHT

After opening night, Smith felt a new wave of confidence. ‘I can do this.’

His favorite scene was when the whole cast was on stage in an ensemble, and he could see how much

He recalls first noticing symptoms in 2015, while snowshoeing in Rocky Mountain National Park.

He struggled to breathe with each step, thinking, “What is the matter with me?” He worried that he was having a heart attack. Others on the trip also felt short of breath because of the high altitude, but Smith sensed his symptoms were more serious.

After the hike, Smith visited his primary care physician who also suspected the high altitude and the difficulty of marching in snowshoes.

He switched doctors several times because they disregarded his symptoms.

The fourth doctor he visited referred him to a cardiologist and pulmonologist after hearing Smith’s

COVER STORY

trouble climbing stairs and shortness of breath while exercising.

The cardiologist discovered a hole between two chambers of Smith’s heart after a bubble test. The hole has been there since birth but was causing his heart and lungs to overwork as he lost oxygen through the hole. As a result of the stress on his heart and lungs, Smith developed pulmonary arterial hypertension.

“If I was diagnosed in my 20s, maybe I could’ve had surgery to seal up the hole,” Smith said. “But in my 50s, I’ve already lived with it so long the best thing to do was manage my symptoms.”

CARE PLAN

To treat his PH, Smith needed medication to widen his pulmonary arteries so he could resume activities as normally as possible.

“I can’t do much cardio still, like I can’t swim, but I can walk up the stairs without having to stop halfway through,” Smith said. “I can go on brisk walks with my wife and lift weights.”

Smith takes 10 milligrams of Opsumit, 1 milligram of Adempas three times a day, and Clopidogrel, which prevents strokes and heart attacks, mixed with blood thinners and blood pressure medicines.

During the Chitty Chitty Bang Bang production, he adjusted his Adempas intake from 2 milligrams to 1 milligram because a side effect of the drug is congestion.

Smith said he appreciates how his care team adjusts his medications depending on his lifestyle.

PHASSOCIATION.ORG 23

Not Just For Kids

24 PATHLIGHT

Connection and Support through Gaming

HEALTH MATTERS

C

arla Kinsey of Michigan discovered her love of video games in the 1980s.

She started gaming when a life-changing accident left her in extreme, constant pain. She went through suicide intervention because the pain was so great that she saw no other way out.

During her recovery process, Kinsey’s mother gave her a Nintendo gaming system. After an hour of playing Super Mario Bros., Kinsey realized she hadn’t thought about her pain at all.

“Video games saved my life,” she says. “It gave me a way to keep going.”

Video and online gaming offers an outlet for people with chronic pain and serious illness to escape into another world. Gaming also can lead to genuine, real-world connections with other people. Kinsey and two other people affected by pulmonary hypertension describe how gaming fits into their care plan and enriches their lives.

When Kinsey’s PH symptoms began to worsen, video games became a regular part of her daily routine.

“With PH, you’re so often tired but can’t sleep, and if you sit there doing

nothing, boredom sets in,” she says.

“That can lead to dark paths in your mind.”

Kinsey’s doctors have told her that hyperfocus on games can be helpful and even therapeutic when dealing with medical problems. Playing video games on her phone also makes it easier to pass the time during long waits at the doctor’s office.

Kinsey, who has led the Pulmonary Hypertension Association’s online patient support group, used to tell members to keep doing things they loved and reminded them that their life wasn’t over because of their PH.

Kinsey even hooked her parents on video games. Her statistician father tracked his progress and win statistics on Solitaire. Her mother was among the first 10 people in Michigan to own an Atari and had a long-standing love of the Legend of Zelda series, which has world-exploration and puzzle-solving features.

Lifelong readers, Kinsey’s parents always encouraged her to keep childhood magic alive.

“I don’t ever want to lose the magic of childhood that lives in my heart,” she says. “Being a kid means you find the joy in things. I think the day I grow up will be the day I die.”

DISEASE DISTRACTION

“It’s important to let yourself be distracted,” she says. “Don’t stay focused on this thing you’ve been told you have.”

Now 71, Kinsey has been told to “grow up” many times in response to her video gaming hobby. People in her generation often don’t realize not all video games are mindless or violent, she says. “Most of the really good ones require a lot of planning and strategic thinking as well as manual dexterity.”

INTENSIFIED HOBBY

Similarly, Shannon Kidman of Newport News, Virginia, has been told she should “grow up and do something more adult.” Shannon, who was diagnosed with PH in August 2022, has become homebound because she needs supplemental oxygen. While Kidman has always enjoyed video games and started playing arcade games in 1984, she became a hardcore gamer after getting sick.

“I’m very choosy about which games I play,” she says. If a game doesn’t stimulate her mind, it goes into the discard pile. She loves games that challenge her and make her think. Her favorite game is Skyrim, an open-world game that gives players free reign to explore a fantasy world steeped in lore and magic. The game has infinite options for which quest to complete and how to approach the game’s puzzles.

Left: Carla Kinsey and family at PHA O2breathe walk in 2023.

PHASSOCIATION.ORG 25

HEALTH MATTERS

‘As a chronically ill person, it allows you to live out things you

might not experience in the real world. It can help you process trauma you didn’t know you needed to process.’

SYDNEY WARD

“I don’t know how long I have left in this world, but I hope to go out playing video games,” Kidman says. “When I pass, I want my copy of Skyrim buried with me.”

games to distract or “dissociate” when they have intense pain and low energy, their big passion is role-playing games like Dungeons and Dragons, which they play online.

“Role playing in D&D allows you to FAN APPRECIATION ‘live in your character.’ You choose who Kidman loves the game so much your character is and what their talents that she wrote to Skyrim creators in and weaknesses are. Their personality, Maryland to thank them for making values, etc., can be different from the game and tell them how much your everyday self, so you can explore it meant to her. Afterward, she was different parts of yourself,” Ward says surprised to receive a package in the “As a chronically ill person, it allows mail. The creators sent her a reply, along you to live out things you might not with a box of Skyrim swag, including a experience in the real world. It can help hat, pendant, shirt, figures and a poster you process trauma you didn’t know signed by the developer. you needed to process.”

Kidman also plays video games “Playing online is great because online and has formed long-lasting you can still play when someone is friendships by playing with people in sick,” they say. “I don’t have to worry Canada, England, Spain and Poland. about spreading germs. D&D gives us a “It amazes me that I can talk in real consistent way of getting in touch and time to people around the world,” she regularly spending three-plus hours says. “This is how I get out into the real together every other week — it deepens world. They’ll tell me about their day, those relationships.” and I get to hear about what’s going Ward says people who never have on in their part of the world. They’re played D&D might imagine it’s my support network. If I don’t check exclusively a whimsical, high-fantasy in after two days or so, I have online setting, or a thing that players have to friends who email me and ask if I’m be really serious about. okay.”

“But there are as many ways and worlds to play in as you can imagine,” ONLINE EXPLORATION AND they say. “There’s a style of play and NEW EXPERIENCES setting out there that would match Like Kidman, Sydney Ward of everyone’s interest. I prefer to play Minnesota has also found meaningful in story-driven campaigns that are personal connections through online focused on character growth, rather gaming. While Sydney plays cozy video than creating perfectly optimized 26 PATHLIGHT

characters designed for a battle-focused campaign.”

DEVELOPING FRIENDSHIPS

After some trial and error with different play styles, Ward found a consistent group that has played online together every other week for more than three years. The group met through a Discord (social network) group for femme and nonbinary people who play D&D, and the players have become some of Ward’s best friends.

The dungeon master — the person in charge of planning the campaign, leading the game and creating the details of the world where the game takes place — sent each player a handcrafted gift specifically related to their characters.

When the group’s first campaign was coming to an end in 2022, the players decided to meet up in person at an Airbnb to play their final session together.

“Our dungeon master took the lead on planning how the group would operate in person,” Ward says.

“Everyone voluntarily isolated for the week prior to the event, and those who had to fly to the Airbnb location wore heavy-duty masks while traveling. All these precautions were taken without me having to ask. It felt very wholesome and deeply thoughtful.”

HEALTH MATTERS

Calling all Texans!

Join Us for Houston Workshop and Walk

I Sandeep Sahay

Nidhy Varghese

t’s not too late to join the Houston-area pulmonary hypertension community for PHA’s next patient and caregiver workshop. The workshop will take place 10 a.m. to 4 p.m. April 6.

This free Pulmonary Hypertension Association event includes interactive education sessions and opportunities to network with fellow patients, caregivers, health care professionals and representatives from companies that make PH treatments.

Attendees should expect to gain insight into new developments in PH treatment and learn about managing their PH. PHA Connects: PH Community Workshops are invaluable opportunities to interact with health care professionals who specialize in PH and have a better understanding of your needs. Education sessions will be available in English and Spanish.

You also can connect with others on a similar journey by attending a support group at the event. Choose from one of three support groups: one for those with PH, one for children under 17 and their parents, and one for caregivers.

The workshop weekend also includes a PHA fundraiser, the second annual Houston O2breathe walk.

“It is wonderful to come together, meet others and network,” said Annabel Mejorado, of Rowland Heights, California, who attended the San Diego workshop. “Networking is not just about sharing stories. It’s about building a community that understands and supports each other.”

For first-time workshop attendee Maia Jones of Chula Vista, California, the San Diego workshop was a great experience.

“I loved all I learned,” Jones said. “It was nice to meet others like me. I am so grateful that this

Pamela and Johnie Myers were among 70 attendees at the July 2023 PHA Connects: PH Community Workshop in Boston.

event [was] easily accessible and free … So nice to know I am not alone.”

The workshop allows patients and their families to openly discuss their day-to-day concerns and question PH experts beyond clinic walls and time-limited appointments, says Sandeep Sahay, co-director of the PH program at Houston Methodist Hospital. The workshop will be patient-centric and give attendees an opportunity to learn about upcoming and cutting-edge PH research, he says. Nidhy Varghese, medical director of Texas Children’s Hypertension Center is the other co-chair.

While in Houston, join us for the onemile O2breathe walk and celebration on Sunday, April 7. Registration is free, and you’ll receive a personalized fundraising page after signing up. Raise $50 to receive a t-shirt.

Register for both today. bit.ly/PHAinHouston

PHASSOCIATION.ORG 27

HEALTH MATTERS

COMMITMENT To Quality PH Care Accreditation program turns 10 MELANIE PADGETT POWERS is a freelance health care writer and editor in the Washington, D.C., area.

BY MELANIE PADGETT POWERS

A

decade after PHA began accrediting pulmonary hypertension care centers, the accreditation program has grown significantly. Today, PHA teams have accredited 85 centers across the United States. As this year began, eight were newly accredited and 25 were reaccredited, a process that ensures centers maintain their high standards. Twenty new applications are under review.

“The accreditation program is one big quality improvement initiative,” says Murali Chakinala, a physician who specializes in PH and other pulmonary vascular diseases at Washington University School of Medicine in St. Louis.

The Pulmonary Hypertension Association has been accrediting Pulmonary Hypertension Care Centers since 2014 to expand access to quality specialized PH care. The PHCC program began in 2011 after PHA’s Scientific Leadership Committee saw a need to improve PH diagnosis and management.

“The program was designed to try to help the centers that are really invested in pulmonary hypertension raise their overall services and performance to meet some type of national standard,” says Chakinala, past chair of PHA’s Scientific Leadership Committee and a committee member when the program was conceived.

At the time, PH care was becoming more decentralized, which could compromise the care people received, Chakinala says. The committee wanted to create more expert centers and Left: Ascension Seton Medical Group in Austin, Texas.

Opposite page: PH team at Inova Fairfax Medical Center, Virginia.

28 PATHLIGHT

HEALTH MATTERS

‘As a comprehensive care center, we take pride in staying on the cutting edge of pulmonary hypertension therapy.’

VIKRAMJIT KHANGOORA

make sure people with PH were being directed to them.

In 2014, the program was ready to launch, and PHA invited medical centers that treat PH to apply to become accredited PH Care Centers.

HOW ACCREDITATION WORKS

Programs can be accredited in two categories: Regional Clinical Programs or Centers of Comprehensive Care.

While both types of programs provide excellent care, Centers of Comprehensive Care see more patients and can participate in PH research. Regional Clinical Programs must collaborate with Centers of Comprehensive Care by referring people with PH who might benefit from therapy not available at the regional center, including initial infusion therapy and clinical trial enrollment. Comprehensive care

centers can assist regional programs with more advanced cases.

To be accredited, medical centers must go through an evaluation process and meet specific criteria. They must demonstrate their commitment to PH patients and have a variety of health care professionals on a cohesive team.

All accredited care centers must have resources to treat all forms of PH and follow recommended evidence-based PH guidelines.

“As a comprehensive care center, we take pride in staying on the cutting edge of pulmonary hypertension therapy,” says Vikramjit Khangoora, associate medical director of the advanced lung disease and transplant program at Inova Fairfax Medical Center in Virginia. “We have a number of experts, not just folks who have been doing this for years, but folks who are nationally and internationally

recognized as experts in pulmonary hypertension.”

The newly accredited Inova program sees 400 people with PH — who come from nearby suburban and urban areas, as well as from rural Virginia and West Virginia.

Inova PH clinicians spread awareness about PH and their program by meeting with primary care physicians, pulmonologists and cardiologists throughout the region.

“We see in our PH population that diagnosis is often delayed by a year or years [because physicians] often don’t recognize the presence of pulmonary hypertension,” Khangoora says. “We always tell centers that they should have a very low bar for reaching out to us, that we’re just a phone call away if patients need to be discussed and they need help in determining what the next steps would be in terms of diagnosis.”

PHASSOCIATION.ORG 29

HEALTH MATTERS

University of Vermont Medical Center in Burlington (from left): Maryellen Antkowiak, MD; William Hopkins, MD; Charlotte Rainville, RN; Jessica Badlam, MD; Sean Carpenter, RPH; and Jaime Mathieson, RN.

PROCESS IMPROVES PROGRAM

Ascension Seton Medical Group in Austin, Texas, is a newly accredited Regional Clinical Program. The program has grown in the past 15 years from one physician to four plus a nurse practitioner. The program sought accreditation to increase awareness about the center, but the application process actually improved the program, says John Dallas, a physician and medical director of the PH program.

The process requires “getting all of your policies and procedures down on paper, and there’s a lot of quality control that improves when you do that,” Dallas says. “Getting our patient roster in place let us see exactly how many patients we had and what patients were on particular therapies.”

Ascension Seton’s PH program also implemented training programs at the hospital, particularly with intensive care nurses and the inpatient pharmacy team. “That’s led to significant improvement in the care of our patients when they’re in the hospital,” Dallas says.

30 PATHLIGHT

Similarly, the soon-to-be accredited Regional Clinical Program at the University of Vermont Medical Center in Burlington also improved through the application process, says Jessica B. Badlam, a physician and the program’s medical director.

‘Getting our patient roster in place let us see exactly how many patients we had and what patients were on particular therapies.’

JOHN DALLAS

“It’s really made us look at everything that we’re doing and how we can optimize it,” she says. “It let us talk to our department in the hospital and be able to advocate for ourselves, and ultimately for the patients, about what resources we need for the program. Just the process of applying has made us already think about changing and growing.”

EXPANDING ACCESS

The growth of PH centers helps reduce travel time for people with PH, who may need to see their care teams frequently. In fact, the Austin program began 15 years ago because the next closest PH center was in San Antonio, nearly two hours away.

“Even if they did travel to another city, they’re going to be hospitalized at some point in their local town, so it’s very beneficial to the patients to have people that are familiar with their care if they do end up in the hospital,” Dallas says.

The University of Vermont PH program also fills a valuable need in a rural part of the country. Without the center — which is awaiting accreditation in early 2024 as a Regional Clinical Program — people with PH would have to drive four to six hours one way to Boston or Rochester, New York.

Many geographical, cultural and socioeconomic reasons make it difficult for patients to travel that far to get the same level of care, Badlam says.

HEALTH MATTERS

“Providing it closer to home and more accessible is really important to us.”

Badlam is originally from northern New York and has a particular interest in serving rural communities. When she was recruited to Vermont from Colorado in 2018, she says her goal was always to expand the program and seek accreditation. The program now includes three physicians, two nurses and a specialty pharmacist.

“We’ve grown both clinically and from a research perspective,” Badlam says. “We have a few clinical trials that we’re enrolling in, and we have two research coordinators who have some dedicated time for PH studies that work with us.”

PH is an “extraordinarily complex, oftentimes underappreciated” disease, Khangoora says. PH experts know it takes a lot of expertise and experience to treat each person appropriately and effectively.

“We really wanted to push our program to the point that we were doing as much as we could to make sure patients were taken care of — from diagnosis to treatment to bridge to transplant — every step of the process in the most thorough and cutting-edge way that we possibly could,” Khangoora says.

PHA continues to expand the accreditation program, recognizing that some areas of the country still

don’t have easy access to PH centers.

Chakinala says the collaboration and research efforts can continue to grow.

“We’re hoping it will go to the next level in its evolution,” he says. “It’s been a true labor of love and endeavor for many people … and I’m thrilled that PHA is still committed to doing this for our patient community.”

Find a Pulmonary Hypertension Care Center: PHAssociation.org/ phcarecenters/ accredited-centers.

Do you have pulmonary hypertension or want to learn more about PH? Connect with others affected

by PH to find education, support and hope for the future. Join a Pulmonary Hypertension Association support group.

Join a PHA Support Group PHASSOCIATION.ORG 31

DONOR PROFILE

Michigan Students Honor Classmate With Donation

E ‘I will never forget the radiant look on Madison’s face when we walked into that first ballroom, and she saw a room full of people like herself. …

She was no longer alone.’

CHERYL WEGENER

32 PATHLIGHT

very spring, students at Brighton High School in Michigan come together for a week-long event to give back to their community. National Honor Society members review applications for worthy causes, then select charitable organizations to receive proceeds from the fundraising event.

In May 2023, the Brighton Senior Survivor event raised $50,000 for the Pulmonary Hypertension Association and $50,000 for the I Will Right Now Foundation.

The Brighton students chose PHA as a tribute to Madison Wegener, who died of pulmonary hypertension in January 2020 when she was a freshman. Rob and Cheryl Wegener, Madison’s parents, will present the $50,000 check this summer at PHA 2024 International PH Conference and Scientific Sessions in Indianapolis.

“When I heard that Madison’s charity had been chosen, I felt relief, gratitude and a slight sense of apprehension,” said Cheryl Wegener, who teaches at Brighton High School.

“In my mind, I said, ‘We did it, Madison, and we are going to make you proud.’”

The Wegeners were honored that the class had chosen their video

application. Cheryl Wegener worried that she would have failed her daughter if the seniors hadn’t selected PHA. “After all, three years had passed.

This was a disease that few had heard of. With it being rare, wouldn’t it make sense to fundraise for a disease that impacts more people?”

In addition to the Brighton Senior Survivor donation, the Wegeners received Madison’s honorary diploma from the school.

COMMUNITY SUPPORT

During the eight years she lived with PH, Madison always had her community by her side.

“When Madison was in the hospital that very last time, our Brighton community rallied behind our family,” Cheryl Wegener says.

“Sports teams wore purple. The large window at the high school read ‘Team Madison,’ and an infamous statue in the heart of downtown donned a pulmonary hypertension t-shirt.”

Nearly 800 people attended Madison’s celebration of life, including many Brighton staff and students.

After Madison’s death, students honored her during halftime of a basketball game against Brighton’s biggest rival. “‘Sweet Caroline,’ one

DONOR PROFILE

of Madison’s favorite songs, was booming, and in both teams’ student sections, nearly everyone wore purple,” Cheryl Wegener recalls.

TRIBUTE

For the Wegener family, the check ceremony at PHA 2024 will mark a fitting tribute to Madison. The family became immersed in the PH community after attending its first PHA conference in Florida.

“I will never forget the radiant look on Madison’s face when we walked into that first ballroom, and she saw a room full of people like herself,” Cheryl Wegener recalls. “Some wore oxygen, some rode scooters, and others had pumps … She was no longer alone.”

PHA conferences enabled Madison to befriend other kids with PH, such

as Laney Tolley [opposite page, left].

Those friendships lasted throughout her life.

“We were fortunate enough to attend each conference. Sure, it was a travel adventure that included a cool field trip and the opportunity to model in a fashion show, but for Madison, it was the connections formed that made all the difference,” Cheryl Wegener says.

Make a gift to PHA to help transform lives, comfort those who feel isolated and overwhelmed and send a resounding message that no one should face PH alone.

PHassociation.org/ donate-now

Transform your giving with new options You can support the Pulmonary Hypertension Association’s mission through non-cash options that could have additional tax benefits. Scan the QR code to learn more about giving stocks, cryptocurrency, gifts from your IRA or a grant from a donoradvised fund. Each offering has unique tax benefits, allowing you to support PHA in a way that also maximizes your financial goals.

PHAssociation.org/ donate/information

CALENDAR OF EVENTS ■ PHA Events ■ National O₂breathe Events ■ Community Fundraising Events

VIRTUAL FUNDRAISERS Visit PHAssociation.org/pha-fundraising-events to find a fundraising event in your area.

QUESTIONS? Contact us at 240-485-0762 or events@PHAssociation.org.

APRIL 6 PHA Connects: PH Community Workshop Houston PHAssociation.org/ phworkshop

AUG. 15-18 PHA 2024 International PH Conference and Scientific Sessions Indianapolis PHAssociation.org/conference

APRIL 7 Houston O2breathe Walk Houston phaevents.org/houston2024

OCT. 26 PHA Connects: PH Community Workshop Phoenix PHAssociation.org/ phworkshop

APRIL 13 SoCal O2breathe Walk Long Beach, California phaevents.org/socal2024 MAY 4 AnMed Walk for Your Health Anderson, South Carolina phaevents.org/anmed2024

See our calendar at PHAssociation.org/events.

PHASSOCIATION.ORG 33

Navigating Pulmonary Hypertension A Guide for Newly Diagnosed Patients NEW!

ORDER YOUR FREE COPY — IN SPANISH OR ENGLISH 301-565-3004 PHAssociation.org/NavigatingPH Support@PHAssociation.org 34 PATHLIGHT

PATHLIGHT

Passages

PHA’S LEGACY OF HOPE

Since the Pulmonary Hypertension Association (PHA) began publishing Pathlight, “Passages” has provided a place to memorialize people with pulmonary hypertension who pass away. PHA extends its sympathy to the families and friends of these individuals and rededicates itself to its mission in their memory.

Nancy E. Armitage Maeberta Bobb Gwendolyn Butsch Karen Caliendo Evelyn Crespo Priscilla Davis Fred J. Ellsmore Colleen Enghauser Nancy Everidge Soby Fennell Milton B. Gilmer Theresa D. Hanks Kathy Inman Daniel P. King

Benita L. Kosiara Juanita E. Lang Veronica D. Lilly Lois Lucking Genea N. Marquez Stephanie Patlan Maude E. Richmond Debora K. Shipley Kenneth B. Smith Felicia Soissons-Segal Francisca G. Weisman Wayne E. Williams Elizabeth A. Wood

The accuracy of this list is important to us. Please contact the PHA office at 301-565-3004 x746 or Passages@PHAssociation.org to share the name of your recently deceased loved one or report an error or omission.

Your donations in memory of others, in honor of others and in support of our mission mean so much to the entire PH community, and we thank you.

To honor those who have included PHA in their estate plans or whose legacies have been realized, PHA created the Legacy of Hope Society. PHA is pleased to recognize the following members: Kay McMillin Laura* and Rino Aldrighetti* Joseph W. Mihuc* Alice A. Arnott* Linda Miles* Sandra A. Awood* Karen S. Moody Dauna L. Bauer* Larry D. Moody Sylvia M. Becherer* Pamela R. Morris Joan F. Bennett-Schenecker* Marjorie D. Mott* Kris L. Best Joyce L. Mowrer* Gloria G. Blodgett* Pamela and Timothy O’Connor Dorothy E. Bradley* Helina Ofori Mary M. Brady* Dorothy M.* and Harry J. R. J. Braun Olson* Roberta F. Browning* and Theresa “Terry” E. (Cavanaugh) Lee A. Broadbent O’Reilly* Rita and Bruce Brundage Rita and Guy Orth Colleen Brunetti Patricia R.* and Gerald D. Stephen Carter-Hicks Paton* Colleen and Shawn Connor Cynthia and John R. Pickles Jane P.* and Harold P. Cooper Jean D. Pitcher* James F. Corbett* Carol L. Powell* Nicole M. Creech Frances A. Price Laura H. D’Anna Carol J. Posner* and Marc Charles W. DeVier, III* Priore Linda M. Feibel* Susan Tess Rae* Barbara T. Gamer Diane Ramirez Stacey Gausling* Cyndy D. Reynolds* Franklin D. Gillespie* Dorothy A. Ryan* Jeffery S. Hall* James Ryan* Tammy A.* and Dean S. Hazen Louise C.* and Gene P.* Carl Hicks, Jr. Salvucci Phyllis M. Hill* Judith and Edwin L. Simpson Jackie Holt Kelley Skumautz Richard L. Horrocks Laverne Smith* Constance G. Ives* Joanne Sperando Terri L. Jakuboski* Marcia and Jack Stibbs Stanley T. Jusinski Helena M. Strauch* Laura J. Kelly* Douglas R. Taylor James Kenney Frank A. Tobac* Jessie Kohler-Wenninger Martha and Carlos Torres Terri L. Kopp* Deborah J. and Roger K. Towle Debbie L. and Mitchell Carol B. Ungar Koppelman Reinhold Vogel* Frank D. Koppelman* Carol E. Vreim Dee* and Walter Kruger* Daniel R. Walsh* Gloria J. Lang* Sharon K. Wendt Marie* and Ronald J. Andrea and Stephen L. White Levendoski * deceased Mary Jo* and Thomas Linnen* Sally Maddox* Sherry Mannel Bonnie and Michael D. McGoon

PHASSOCIATION.ORG 35

PULMONARY HYPERTENSION ASSOCIATION 8401 COLESVILLE ROAD, SUITE 200 SILVER SPRING, MD 20910

AUGUST 15-18 INDIANAPOLIS Registration opens March 29.

PHAssociation.org/2024