By Fiona Soltes
Steve Kopenitz clearly remembers the moment he discovered his grandson had been diagnosed with severe hemophilia A – as well as when he learned the town doctor, seasoned though he was, had never seen a patient with the disorder throughout his career.
“We were totally lost,” he said. “We felt as lonely and scared as we ever had in our lives.”
That was six years ago, and Kopenitz and his wife, Sheila, are doing their best to ensure nobody else has to experience that level of uncertainty. The Texas-based couple made a generous gift to support the Connections for Learning program, which covers travel, registration and housing for qualified families wanting to attend the Bleeding Disorders Conference, among other initiatives. With the help of the Kopenitz family and other donors, 73 families who would not otherwise be able to attend the event will take part. Thirty of those families will attend for the first time.
As the Kopenitz’s son and daughter-in-law focused on raising their newborn, Steve Kopenitz began learning all he could about the disorder. Along the way, he said, “NHF popped up quite a bit.” The five of them attended a BDC in Orlando, “and for the first time, we felt connected.” Those connections have continued to expand. They began donating to NHF the year after attending that first conference. They were named NHF’s Philanthropists of the Year in 2020, and in 2021, began supporting the organization’s health equity initiatives. They launched the No Limitations Field Day in 2022.
The Kopenitz family has continued to grow, as well. Another grandson was born in 2020, and he, too, was diagnosed with hemophilia A. It drove home how much the education and community had helped.
“I just kept thinking about the people that I met at BDC, and all of those we didn’t meet, because they just weren’t there,” he said. “Maybe they weren’t aware of NHF. Maybe they couldn’t afford it. We’ve been blessed more than we deserve, and we knew we could help.”
These days, the boys are doing well. One plays soccer, and the other is interested in Taekwondo; they receive the level of care that allows them to lead lives that are as active and as normal as possible. During a recent visit, Kopenitz said, it took a couple of days before he even thought about his grandson having a bleeding disorder. “It’s important to educate yourself,” he said. “I know that has made a huge role in our comfort level as a family.”
Nikole Scappe, NHF manager of education, said this year, more than 200 families applied for assistance through NHF’s six different travel grant programs. It’s the hope that those attending will come away not only with connections and support, but also information to help them advocate for themselves and their loved ones. Travel grant recipients attend a special welcome session, “and the energy is crazy, having everyone together,” she said. As priority is given to first-timers for the grants, there’s also special help for preparation, including packing lists and photos of team to help with instant recognition. All told, she said, it's an opportunity to welcome these families with open arms.
“Speaking with Steve and Sheila, you understand the impact of this conference,” she said. “It’s finding those connections and those resources.” Learn more about travel grants at https://na.eventscloud.com/website/48326/travel-grants/. ■