4 Steps to Resume Care and Normalcy

Patients and care team pairs shared their stories in Journeys lunch. Here, Michelle Liu, M.D., M.P.H., FAAOH, and Stephen Walker, M.S., CRNP discuss the care journey of Michelle’s daughter Esther, who has PH.

The multi-center study, which aims to identify biomarkers to improve PH diagnosis and treatment, is funded by PHA and the National Institutes for Health National Heart, Lung, and Blood Institute.

KEEPING HOPE ALIVE

Saturday night was a big moment for winners of PHA’s Outstanding Member Awards. For one recipient, the award was a particularly sweet surprise.

Although other award winners knew about their awards before the ceremony, 11-year-old Jackson Wall learned he won as his name was announced onstage. When Jackson heard his name, he jumped out of his chair, and his face lit up with joy. He rushed to join emcee Doug Taylor and PHA President and CEO Matt Granato onstage to accept his award.

“I was really shocked,” Jackson said afterward. “I couldn’t believe it.”

Jackson was nominated for Outstanding Young PH Citizen, which recognized his volunteer efforts, advocacy and more.

Jackson’s fun didn’t end at the awards gala.

He also participated in in the Fashion Show with 15 other patients and caregivers. He sported a customized karate uniform known as gi.

FASHION SHOW AND CLOSING PARTY

The Fashion Show celebrated how people with PH conceal or highlight their oxygen cannulas, mobility devices and medication pumps. Emceed by Doug Taylor and Nicole Creech, participants modeled outfits in four categories: formal wear, PH pride (zebra print and periwinkle), sports and superheroes. After the fashion show, attendees celebrated with dancing, games and photo booths.

At previous PHA conferences, Jackson participated in the fashion shows. He came up with the idea to wear a karate gi for PHA 2022 with his mom, Jayna, who used her Cricut to customize the gi with PH-centric designs.

Gwendolyn Brown, a PHA support group leader and PH patient from Cleveland, Ohio, rocks the outfit she hand made for the PHA 2022 Fashion Show.

CLOSING CELEBRATION

Sunday morning, PH advocate Stephen Carter-Hicks performed two songs during the closing brunch: “You’ll Never Be Alone” by Gerry and the Pacemakers and “Keep Hope Alive,” a song originally composed for him to sing at PHA 2020.

As Stephen relayed lyrics of never giving up and paving a path for the future, audience members hung on to every word.

“I was in tears with both of his songs,” Hope said.