Named Grant Donors
The Skuldt Family
Members of the Skuldt family are among PHA’s most PHenomenal contributors. Their generous donations to establish Cordelia’s Pediatric PH Research and Mentoring Grants in honor of their granddaughter, as well as their success in mobilizing their local community to raise awareness and funds for PHA, are truly inspiring. Read their story and learn how named research grants can make a difference in the lives of those affected by PH.
In November 2007, Juliet and Dean Skuldt of Arlington Heights, Ill., stopped at the grocery store with their daughters, Lucia and Cordelia, on the way home from a late-season costume party. Suddenly, in the store, 4-year-old Cordelia cried, “Mommy, I don’t feel good.” By the time the family reached the parking lot, Cordelia had turned white and was shaking as she clutched her chest.
Her parents knew immediately that something was extremely wrong and called 911. It was more than two weeks after that first night in the ER, and many more frightening episodes later, when Cordelia was finally diagnosed with pulmonary hypertension. She spent much of the next two months as an inpatient at a children’s hospital in Chicago while doctors attempted to stabilize her and understand the more challenging aspects of her condition.
Juliet and Dean began to research PH online to find answers to their many questions. “The initial picture was grim,” Juliet says. After reaching PHA’s website, the Skuldts received the clarity they needed. “PHA’s website was great to get up to speed and had just a wealth of information on PH.” With the help of PHA and a strong support network of family and friends, Cordelia and her family adjusted to their “new normal.” Later, after Cordelia’s condition stabilized, the Skuldts began to access PHA’s resources for families and got involved in local fundraising events.
“A Shaping Force”
Shortly after Cordelia was diagnosed, the Skuldts traveled to New York to see Dr. Robyn Barst, who was a leading pediatric PH specialist. Cordelia was put on an aggressive therapy schedule, which empowered the family with a renewed sense of hope for the future. “Our whole perspective changed. Life is full of challenges — and now PH — but we have to move forward with hope and positivity.” Dr. Barst passed away in 2013; in recent years, Cordelia has been a patient of Dr. Dunbar Ivy at the Children’s Hospital Colorado. The Skuldts continue to be inspired by the steady support from all of Cordelia’s doctors and the progress they see in Cordelia.
Since Cordelia’s diagnosis, PH has had a profound impact on each member of the Skuldt family. Juliet describes it as “a shaping force” for her daughters, saying, “Both girls have taken on more adult concerns than kids their own age who haven’t experienced these events.” But, she adds, “These are also the kinds of circumstances that truly develop character and foster empathy for the broader world. PH is a big part of all our lives, but both our girls know we are not the only ones facing challenges.”
While the family has enjoyed years when Cordelia’s health has been good, they have also faced difficult stretches marked by life-threatening events, long hospital stays, and visits to doctors who struggled to make sense of Cordelia’s condition. These times make the family grateful for tenacious doctors, excellent care and effective therapies. However, they are also reminded of the need for even more therapies and research progress in the relentless battle to understand and cure PH.
“A Way Forward”
In 2013, Juliet and Dean became involved with PHA’s Midwest chapter, which offered them opportunities to meet other families who face similar challenges and to advance PHA’s mission through fundraising. Now, three years later, the Skuldt family and numerous supportive friends have participated in O2 breathe Walks, Stride for a Cure, Midwest galas and other Midwest chapter events to raise awareness and funds for a cure. Many of the Skuldts’ friends have been innovative with their fundraising efforts, including performing live music at a local pub to benefit PHA and selling T-shirts with unique, handmade designs, with all the proceeds going to PHA. The two middle schools in Arlington Heights, where the Skuldts live, organized a successful basketball fundraiser this past spring called “Cross the Court for Cordelia,” where the staff of the two schools played each other and the community paid to watch this fun and friendly rivalry, raising $11,500 for pediatric PH research.
As she faced difficulties with her health this past year and saw the ongoing creative generosity of others, Cordelia was inspired to take her own efforts in the fight against PH a step further. Recognizing that a lack of awareness of PH has led to many misdiagnoses with tragic consequences, Cordelia decided to launch a “Blue Lip Kiss Challenge.” With the help of family and friends, Cordelia wrote a script and filmed a video that challenges others to learn about PH and spread the word by taking photos of themselves with blue lips, posting these on social media, and challenging others to do the same. She hoped to get at least 1,000 people to rise to the occasion. Now, with more than 9,000 views, Cordelia has been more encouraged and motivated than ever before: “I was so happy to see the number of pictures go way beyond my expectations!”
“A Lasting Impact”
Meanwhile, more than 300 miles away, Cordelia’s grandparents, Eric and Jan, are also fighting back against PH. Eric, a retired IBM engineer, and Jan, a retired elementary school teacher, became more involved with PHA in 2012.
Jan reached out to well-known cardiologist and PH expert Dr. Michael McGoon at the Mayo Clinic to find out how they could be more involved with supporting PH patients. Dr. McGoon and his wife, Bonnie, host the Reach for the Stars Gala in Rochester, Minnesota, to support PHA research and awareness, and invited Jan and Eric to join the Gala committee in 2013. When discussing options for contributing to the Gala, the Skuldts learned about named research grants as a means to expedite pediatric research through the Barst Fund.
Eric and Jan gave a generous donation to PH research, creating five named research grants in loving honor of their granddaughter, Cordelia. Cordelia’s Pediatric PH Research and Mentoring Grants are part of the larger Dr. Robyn J. Barst Pediatric PH Research and Mentoring Program, supporting one-year mentorships for young clinicians and researchers in the field of pediatric PAH.
Two of the five grants have already been awarded, with another expected in December 2015. Dr. Mehdi Fini, an instructor in the Division of Pulmonary and Critical Care at the University of Colorado Denver, was the recipient in 2013. Dr. Rebecca Johnson Kameny, a clinical instructor in the Division of Pediatrics at the University of California, San Francisco, was the recipient in 2014. Read their full research profiles.
“We are just average and ordinary people using our retirement to support this cause,” says Eric of their generous contributions, “and we want other people like us to do the same.” Jan adds, “This feels really good. We are so happy that we are able to take advantage of this opportunity to help.”
For Dean and Juliet, Eric and Jan’s generosity is inspiring. “It’s not just this hugely significant grant… Eric and Jan are amazing in other aspects of their lives too,” Juliet says, “But really all of us have the ability to make an even greater impact, to be creative with our resources and to extend ourselves further.”
Join the Fight
Each member of the Skuldt family in Illinois and Minnesota is making a significant difference in the fight against PH by getting involved and asking, “What can we do to help?” The strength of the PHA community and the momentum of the fight against PH is fueled by the contributions of PHenomenal individuals and families all over the country, such as Eric, Jan, Dean, Juliet and Cordelia.
For more information about making a named research grant, contact Giving@PHAssociation.org.