Women Power

family in front of tree

Traditionally, women often wait years for a proper bleeding disorders diagnosis. But more awareness, advocacy and treatments are improving things now and for future generations.  By Risa Kerslake, Freelance WriterKristin Voyles didn’t know growing up that she had von Willebrand disease (VWD). Looking back though, it made sense. She bruised easily and had heavy periods. […]

The Legacy of HTCs

Hemophilia treatment centers have been around for almost 50 years. Learn about their history, successes, and new challenges.  By Rebecca A. Clay At 58, Michael Birmingham, of Tacoma, Washington, is old enough to remember what life was like for kids with bleeding disorders before the advent of hemophilia treatment centers (HTCs). Diagnosed with severe hemophilia […]

Career Dreams

New HFA Job Readiness Grants help community members reach their career goals and improve their lives. By Allison Harrison, MSW, Associate Director of Services  Have you ever felt stuck in your career with low pay, limited opportunities that fit your needs or lack of advancement potential? You’re not alone. “Between my physical health and the […]

Fore the Love of the Game

Hogan Lust has become a teenage standout in one-arm golf association tournaments By Melanie Padgett Powers, Managing EditorHogan Lust, age 16, of Tucson, Arizona, has been playing golf since he was a toddler. His parents, Daniel and Corby, are golfers too, so it was only natural their oldest child would play the sport. “He had a […]

Lessons Learned

Members of the bleeding disorders community gathered virtually in September for the HFA Young Adult Advocacy Summit. Here, two first-time participants share their stories and explain why they wanted to get more involved with advocacy efforts. Rodríguez-Rivera, Bayamón, Puerto RicoIn September, I attended the Hemophilia Federation of America (HFA) virtual Young Adult Advocacy Summit. I was part […]

6 Lessons to Prepare for College from One Family’s Ordeal

by Melanie Padgett Powers, Managing EditorWhen Josh Morton rolled his right ankle shooting hoops at college, he thought factor and RICE-rest, ice, compression, elevation-would heal it. But his pain and swelling quickly grew, so he called his mom, who told him to head to the emergency room (ER). What happened next showed Josh and his […]

Adoption as an Option

Several bleeding disorders families share their adoption experiences and advice.   By Holly Leber Simmons, freelance writerNatalie Andrews remembers the first time she saw a picture of her son, Samuel, in 2016. “He looked terrible. He had black eyes and it looked like someone had punched him,” she said. “His joints were badly swollen; he […]

Aging with Resilience

We welcome the first generation of men with hemophilia living into older age-and explore the medical issues that come with it. By Heather Boerner, freelance writerWhen Dan Liedl, who has severe hemophilia A, wakes up in his Morgantown, West Virginia, home every morning, he feels fine. It’s only when he starts to move that he […]

When the Crisis Continues and Compounds

Reflections on financial assistance in a pandemic. By Allison Harrison, MSW, HFA Associate Director of Services Gavin and Nieve* were making ends meet until the COVID-19 pandemic hit. Nieve lost two different jobs in 2020 when the companies that employed her lost business and laid off workers.Gavin, who has hemophilia A, picked up additional work even […]

Inspiring Impact

HFA Events Motivated Maine Mom to Create Museum Fundraiser By Melanie Padgett Powers, Manager Editor of DatelineThrough Hemophilia Foundation of America’s (HFA’s) fundraising efforts, Lianne Lapierre, of Limestone, Maine, discovered her love of biking and running at age 40.Lapierre, whose 14-year-old son has severe hemophilia A, took part in HFA’s Team Resilience for the 2019 […]