For 14 years, Madison Wegener (pictured above, second from right) brought joy and happiness to her family, friends and community. For eight of those years, she lived with PH: going to school, vacationing with her family, attending PHA conferences.

Although she died during her freshman year of high school, her classmates never forgot her. In spring 2023, Brighton High School seniors decided to make a big donation in her name. As part of a weeklong fundraising event, Madison’s former classmates chose the Pulmonary Hypertension Association as one of two beneficiaries. The event raised $100,000, half of which they donated to PHA.

When I heard that Madison’s charity had been chosen, I felt relief, gratitude and a slight sense of apprehension. In my mind, I said, “We did it, Madison, and we are going to make you proud.”

This summer, my husband Rob and I will be honored to present the $50,000 check at PHA 2024 International PH Conference and Scientific Sessions in Indianapolis.

For our family, the check ceremony at PHA 2024 is a fitting tribute to Madison. We found support and encouragement through PHA and learned about PHA conferences through PHA’s support group for parents of children with PH.

When Madison walked into PHA 2012 in Florida, her first conference, she was radiant. She saw people like her: Some had oxygen tanks, some rode scooters and others had infusion pumps. Madison also met her first friend with PH at that conference.

PHA conferences allowed Madison to befriend other kids with PH her own age, and those friendships lasted throughout her lifetime.

After PHA 2012, our family became immersed in the PHA community. PHA provided a wealth of information about how to navigate this unfamiliar rare disease. The real wow factor came when we attended conference. It showed us PHA is an organization that understands the importance of bringing together all parties involved: patients, caregivers and health care providers. We were no longer fighting alone.