As soon as Steve and Sheila Kopenitz learned that their newborn grandson, Steven, had been diagnosed with severe hemophilia A in 2017, they decided to learn as much as they could about the condition. The bleeding disorder didn’t run in their family or in daughter-in-law Emily’s, so they were blindsided by the diagnosis.
“It was a shocking surprise,” Sheila says.
Within a year, the Kopenitzes, who live in Horseshoe Bay, Texas, had educated themselves enough about hemophilia to feel comfortable with the condition and to know that they wanted to attend the National Hemophilia Foundation’s (NHF) annual Bleeding Disorders Conference.
“In my research, I saw comments about the conference and how positive it is,” says Steve, a semiretired senior executive who works for an advisory firm in the energy sector. “So we talked to Emily and our son, Scott, and said, ‘If you’re interested, let’s all go to the conference in Orlando.’ We all agreed it was the right thing to do.”
For Steve and Sheila—along with their son, daughter-in-law and grandson, who live in Odessa, Texas—the experience was profoundly affecting.
“There was so much good and pertinent sharing of information and experiences for new families,” Steve says.
“I left there thinking we are so fortunate we’re able to do this.”
Soon, the Kopenitzes began wondering what their grandson’s life might be like if they weren’t able to attend educational events, or if Scott didn’t have good health insurance for the family. Then they realized that other families, because of financial constraints, may not be able to attend the conference.
“Through education, the conference can help clear the path for them to experience a long, happy and healthy life,” Steve says. “I can’t imagine the difficulty, not being able to attend. We have the ability to attend, and for those that can’t attend for financial reasons, we can help folks out.”
To help people access the types of experiences they had at the conference, the Kopenitzes made a five-year financial commitment to NHF to help ensure that people without the financial means to travel to the conference can attend.
“We made a commitment as a family: We’re going to do everything we can to help not only Steven but also others who are in this position,” Steve says. “This is what they need, and that’s what we’re going to do.”
The couple’s financial commitment allows multiple families to attend the Bleeding Disorders Conference over the next five years, starting with the 2019 conference in Anaheim, California. People can apply for sponsorship through NHF. The Kopenitzes are not involved in the selection process and don’t know who benefits from their generosity, but that doesn’t bother them.
“We feel honored to be part of this,” Steve says. “We are confident that those who get the opportunity to attend the conference will have the same positive results that we have experienced.”
Learn more in the Community Resources section of the NHF website.