Defining Hope, Strength, and Infinite Possibility at BDC 2025

Defining Hope, Strength, and Infinite Possibility

Community member Ryan Warnall's voice filled the auditorium as he performed "The Impossible Dream," setting an emotional tone that would define the National Bleeding Disorders Foundation (NBDF) Opening Session on Thursday, August 21, 2025. His performance captured something essential about this community: a group that has repeatedly turned the impossible into reality, from fighting for a safer blood supply to developing treatments that seemed beyond hope decades ago.

NBDF President & CEO Phil Gattone, M.Ed. took the stage to introduce this year's theme: "We Are." The phrase, he explained, wasn't just a slogan but a call to action rooted in the community's proven track record of achieving the seemingly impossible.

The Impossible Made Real

Gattone reflected on what had inspired him over the past year: advocacy efforts that improved access to care; the joy echoing from bleeding disorders camps, and healthcare teams delivering extraordinary care with deep dedication. He spoke of researchers and pharmaceutical scientists investing in breakthrough treatments that are transforming lives. "We have achieved so much," he said. "But our work is not finished. We are breaking down barriers, expanding access to care in underserved communities, leading with science funding and fellowships, and driving innovation."

The promise extends especially to those historically left behind—women, girls, people with rare bleeding disorders, and other underserved communities who would soon discover that their impossible dreams could become possible too.

We Are a Strong Community

The power of collective action came alive through Kathy Gerus-Darbinson's story. As an HIV survivor whose late husband Michael died of AIDS, she transformed personal tragedy into community mobilization. Starting with other women facing similar struggles, she helped build a grassroots movement that many said could never succeed. "People said it would be impossible to get financial compensation from the government and big pharma," she recalled. "But in 1998, the Ricky Ray Act was signed into law."

Her conversation with chapter leaders Sue Martin of Hemophilia of South Carolina and Rigoberto Garcia, MPH, of Hemophilia of Southern California, illustrated how that same spirit of collective strength continues today. Martin shared how connecting with her local chapter when her young son experienced a kidney bleed had "saved her life,” and how extending that same lifeline to other new families brought profound fulfillment. For Garcia, the wide diversity within his chapter constituents demonstrates the community's growing strength. "Our partnership with NBDF is a shared vision for inclusion, equity, and access," he said. "We want to amplify all the voices and share all the stories."

The message was clear: connection which builds power. As Martin put it: "When we work together, we are unstoppable."

We Are Innovators

The session's exploration of innovation began with a story that embodied the impossible becoming possible. Dr. Glenn Pierce described his childhood with hemophilia—his early years spent cycling in and out of hospitals until, by age 12, he was confined to a wheelchair. "And then we discovered cryoprecipitate," he said. "And although we don't use it now, cryo meant I could go to college and to med school."

That transformation from hospitalized child to medical pioneer illustrates what effective treatment can achieve—allowing people to live with what Pierce called "a hemophilia-free mind." "You are not thinking about hemophilia 90% of the time," he explained. Yet he stressed that most of the world's population affected by bleeding disorders still lacks that luxury, applauding NBDF's commitment to supporting the World Federation of Hemophilia's Treatment for All goals.

Dr. Amy Dunn, current chair of NBDF's Medical and Scientific Advisory Council (MASAC), highlighted how the organization continues setting standards of care amid rapidly advancing treatments. With breakthrough therapies emerging regularly, MASAC's role has become more crucial than ever. "MASAC makes sure that we're translating that therapy or the guidance about how to use those therapies into language that treatment centers can use," she said. The organization also creates patient-focused versions, ensuring community members know exactly what to ask for.

The innovation discussion expanded to include three researchers whose work represents the field's depth. Dr. Beth Warren investigates why individuals with identical diagnoses on the same medications might experience different bleeding patterns, analyzing specific physical motions that could trigger bleeds. Dr. Jenna Moyer focuses her research on women and girls with hemophilia—a historically underrepresented group—emphasizing the critical importance of recognizing and treating heavy menstrual bleeding and other abnormal bleeding symptoms in women with hemophilia.

Dr. Maria Santaella described how NBDF has evolved toward a patient-centric research approach, encouraging attendees to engage with Community Voices in Research—a shift that puts the community's needs and experiences at the center of scientific inquiry.

Dreaming the Possible

As the session drew to a close, Gattone's words brought the themes full circle. "We've honored our past, we've celebrated our present, and we are looking ahead to a future full of possibility because of you," he said. "At NBDF, we believe in more than progress. We believe in people."

The impossible dream that Ryan Warnall sang about at the session's start had become the community's lived reality—and their promise for the future. Through strength, innovation, and unwavering commitment to each other, this community continues transforming the impossible into hope, and hope into tangible change.