Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
I have seen signs for the last few years, but on a cold day just before Christmas, I saw my 14-year-old son not as a little boy, but as a young man. There wasn’t anything extraordinary happening in the moment. He sat at one end of our sectional couch and I was sitting on the […]
“So, he’s still wearing the helmet?” The question, posed by HTC staff at our recent annual visit gave me pause. Yes, my son is almost 5 years old and still wearing his helmet any time his feet are on the floor. I know this is a controversial topic I’ve seen the comment threads on […]
HFA’s Research Team gave and received early an holiday gift this year: knowledge. We attended the 59th annual meeting of the American Society of Hematology (ASH) in Atlanta, Georgia, December 9-12. The unofficial song of the meeting was “Let it Snow” as that (along with the once standing Georgia Dome) is what was on the […]
It is safe to say that most of hemophilia has been unexpected. Even when you are planning for the unexpected you get another unexpected in its place, sort of a Murphy’s Law type deal. And yet, I am always finding things about hemophilia that I never expected from our experience. One of the most profound […]
It’s been two months since wildfires ripped through Northern California leaving a path of destruction in Sonoma and Napa counties like I’ve never seen before and leaving a scar on all of our hearts. I got to see firsthand the importance of community and was proud to see our bleeding disorder community come together to […]
Some of the best sessions I have attended at conferences have been rap sessions. These sessions bring together certain sub-groups in the bleeding disorder community and allow them to have open conversations, asking questions and sharing information with each other. At one rap session, many years ago, a mom in the parents rap session, was […]
I get some pretty stunned responses when I tell family and friends that I am grateful for hemophilia. They can’t understand how it is possible that I can be thankful that my son, Thomas, has unexpected, ill-timed, and painful bleeds. How could anyone find good in dealing with a nonsensical insurance company? Obviously, I could […]
The following is an edited excerpt from a press release from Genentech. To read the press release in full, click here. Genentech, a member of the Roche Group, announced positive results from the Phase III HAVEN 3 study evaluating Hemlibra (emicizumab-kxwh) in adults and adolescents (aged 12 years or older) with hemophilia A without inhibitors to […]
The past six months have been hard. Like hemophilia was managing us instead of us managing hemophilia. I can’t remember the amount of times I sobbed out of frustration, fear and being powerless to help my son. We are still muddling through and each day is a battle. A battle where it seems like we […]
By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits! Our guests on this podcast are Kathryn Clark, a retired dietician, and Eric Burgeson, an active young adult with hemophilia. Kathryn and Eric iscuss ways to keep costs low at the grocery store […]
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