Standing With Us: Senator Joe Addabbo on Advocacy, Step Therapy & the Power of One Story

Standing With Us: Senator Joe Addabbo on Advocacy, Step Therapy & the Power of One Story

New York State Senator Joseph P. Addabbo, Jr. has been one of the most consistent allies our community has in Albany. He sits down with Kai to talk about how one constituent meeting changed the way he sees bleeding disorders legislation, why step therapy reform matters, what his Java with Joe coffee meetings are really like, and the message of hope he carries into a tense political moment.

Dental Care Without Fear: Oral Health and Hemophilia B

In this practical and reassuring episode of Boundless B, Kai M Sorensen speaks with Dr. Douglas Hutchinson, a practicing dentist and father of a son with severe hemophilia B, about a topic many families quietly worry about: dental care. Together, they unpack why brushing, flossing, and dental visits can feel intimidating in the bleeding disorders community — and why avoiding them can create bigger problems down the road. Dr. Hutchinson explains that bleeding gums often point to inflammation, not danger, and shares simple ways families can build safe, effective oral hygiene habits. He also offers guidance on how to talk with your dentist, when your hemophilia treatment center should be involved, and why prevention is one of the best tools families have.

Changing the Language, Changing the Care: A New Era for Women with Bleeding Disorders

What if the biggest barrier to care isn’t access — but the words we use? In this powerful and deeply personal conversation, AMBER FEDERIZO APRN, DNP shares how language, stigma, and outdated clinical assumptions continue to shape — and often limit — care for women and girls with bleeding disorders. Drawing from both her clinical expertise and a life-threatening personal experience, Dr. Federizo challenges long-standing terminology like “carrier,” exposes how bias shows up in emergency care, and offers a clear path forward: better questions, better language, and stronger advocacy. This episode is about more than medicine. It’s about being heard. From rural Nevada to national clinical trials, Amber Federizo is helping redefine what equitable care looks like — and why it’s long overdue.

The Trail of AIDS: From Grief to Government Accountability (Part 2)

In Part 2 of this powerful two-part series, Dana Kuhn’s story moves from private devastation to public accountability. After losing his wife because Dana unknowingly contracted HIV through contaminated blood products, Dana began uncovering internal documents that suggested warnings about blood safety existed earlier than families were ever told. What began as counseling work inside a hospital quietly transformed into an investigation. Through Freedom of Information Act requests, stacks of CDC memos, and collaboration with activists and lawmakers, Dana built what became known as “The Trail of AIDS.” That trail helped trigger an Institute of Medicine investigation, contributed to the Ricky Ray Hemophilia Relief Fund Act, and led to the establishment of the nation’s first Blood Safety Council. But this episode is not just history. Dana is speaking out again because key blood safety oversight bodies have recently been dismantled. The guardrails built from tragedy, he warns, can be weakened faster than people realize. This is a story about accountability, organized community power, and why blood safety is not a policy debate — it is a promise.

The Trail of AIDS: Dana Kuhn’s Story of Love, Loss, and the Fight for Blood Safety (Part 1)

What happens when life-saving treatment becomes life-altering — and the systems meant to protect families move too slowly to prevent harm? In Part 1 of this powerful two-part series, Dana Kuhn shares the deeply personal story that would shape a lifetime of advocacy. Set against the early years of the AIDS epidemic, this episode traces Dana’s journey from a newly ordained minister and young father with mild hemophilia to a caregiver navigating fear, stigma, and devastating loss. After a routine injury leads to his first factor infusion, Dana becomes critically ill — contracting hepatitis through the blood supply at a time when safety systems lagged behind emerging risks. What follows is a cascade of uncertainty: an HIV diagnosis, incomplete public health information, and the heartbreaking realization that his wife is also gravely ill. Through moments of medical neglect, visible stigma, and advocacy born out of desperation, Dana’s story reveals what families in the hemophilia community know all too well — when a diagnosis enters a home, it reshapes every relationship, every decision, and every sense of safety. This episode honors the caregivers who fight when fear takes over rooms meant for healing, and it lays the emotional foundation for the advocacy work that would eventually become Patient Services, Inc.