The candidates for the HFA Board of Directors Executive Committee were asked to record a short video to share rather than a written resume this year. I thought it was a great idea until I realized that I had to do it too. I totally dragged my feet for a few weeks until I reached […]
For someone who spends her days organizing events for a living, it always surprises me how much I look forward to the HFA Symposium each year. It has a similar structure to many of the events I plan – with plenary sessions, workshops, exhibits, and networking events – yet it feels completely different. Yes, […]
In 2008 my husband, two kiddos and I traveled to our first Hemophilia Federation of America (HFA) annual Symposium. We had been to a couple of NHF meetings since the kids had been born but we did not know much about HFA. Kim Bernstein, a truly talented community advocate, had been pushing me that I […]
At Symposium, I wore the same socks for two days in a row, I stayed up four hours past my normal bedtime every night, and I finally realized that I needed to brush my teeth at exactly 7:21 am on Friday… I was like a young child at Symposium: so completely engrossed in everything going […]
One of the things that surprised me most about joining the bleeding disorders community was the sense of family. Thomas’s diagnosis was the first in our family history (although we’d later find out I’m a carrier), so the shock of hemophilia was hard to shake, but the open arms we met made it a bit […]
Check out our HFA Symposium 2012 recap video! Are you ready for our 2013 Symposium in Dallas, TX on April 25 – 27, 2013 http://symposium.hemophiliafed.org/
Michael Jones is a 13 year old with hemophilia A. Michael doesn’t let his hemophilia slow him down, he enjoys playing baseball and staying active. Justin Lindhorst was a part of HFA’s Young Leaders program at Symposium and is now a part of HFA’s Media Task Force.
Nicholas Reiser explains the process of infusing himself with clotting factor. Nicholas Reiser and Leland Smith were both a part of HFA’s Young Leaders program at Symposium and are now a part of HFA’s Media Task Force.
Kelly Champagne talks about the painful accusations that lead to her son being diagnosed with severe hemophilia. At the time her son Micah was diagnosed she could not see light at the end of the tunnel but has now learned to manage his disorder.
Martin shares how the advancements in treatment for his severe hemophilia has affected his life. Martin went from missing 100 days of school his freshman year of high school to only missing 8 days his sophomore year because hemophilia medication was made available to use at home and he no longer had to go to […]
Assisting and Advocating for the Bleeding Disorders Community