Day: January 31, 2022

Celebrating Black History Month

As our nation celebrates Black History Month, the Hemophilia Federation of America would like to recognize the contributions of Black Americans within the bleeding disorders community. This month, we will amplify the stories of Black community members and hope you’ll celebrate them with us.We recognize our society still has many challenges to address, but Black […]

Washington Wire: January 2022

Readers of the Washington Wire will have noticed that HFA publishes a lot of posts about “copay accumulator adjuster programs” (CAAPs). This is a weedy but important topic! CAAPs are a strategy used by insurers to redirect the value of manufacturer copay assistance – which is supposed to help patients afford their share of their […]

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 […]

Multiple Trails. Many Locations. One Team.

Gears for Good National Bike Ride back in person By Meghan Lawton, HFA Associate Director, AdvancementWater bottles were full. Helmets were donned. Shoes were clicked in. It was time to saddle up.Hemophilia Federation of America’s (HFA’s) 2021 Gears for Good National Bike Ride was underway! September 17-19 marked the 12th edition of the annual bike-riding […]