Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
My mighty warrior, Caeleb, still has an inhibitor. His Bethesda Unit (BU) is less than one and his half-life is less than four hours, so we have a ways to go. His BU has reached zero a few times, and I was thrilled! It was a victory, and when you live with an inhibitor […]
By: Kyle McKendall, Staff Member Photography by Kevin Daniels Taken from the Summer 2016 issue of Dateline: Full PDF available here For the first time ever, HFA offered a comprehensive Spanish-language program at its annual Symposium, held in Las Vegas from March 30-April 2, 2016. More than 50 attendees participated in the program and attended […]
Not related by blood. Family because of it. I had a button made with this quote when Max participated in the Beards for Bleeders fund-raiser two years ago. Something I have gained from the bleeding disorder community is an oddly mismatched, but amazing group of BFFs. My gang, as I like to call them. What […]
Until recently my husband and I didn’t realize how alone Chris felt growing up with hemophilia. He had support from family, friends, coaches, teammates, the treatment staff, and us. Yet he didn’t have anyone to talk with that really understood what it was like to have hemophilia. We tried our best to not treat Chris […]
My husband, Alan, and I often get asked, “How did you raise a child with hemophilia who is attempting to climb the highest mountain on every continent?” Most of the time we shake our heads and answer, “We have no idea.” Alan and I have two sons. Our oldest, Andy, does not have hemophilia, and […]
Dear Addy, I really want to be able to help raise awareness of, and funds for the bleeding disorders community. I don’t know what I could do to get people to donate. Please help me! Signed, HemoProud Dear Proud, The best way to raise bleeding disorders awareness, and in turn raise funds to support HFA […]
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, […]
My son Caeleb has struggled with an inhibitor since he was 11 months old. Despite many doctors’ recommendations, it’s never been as “simple” as waiting to get below a 10 Bethesda Unit measurement to start immune tolerance therapy (ITT). He developed a rare allergy to Factor VIII and there is no known treatment or protocol […]
In March 2014 I attended my first HFA conference, and for the first time in my new journey as a hemophilia mother I didn’t feel alone and left truly inspired. Beyond encouragement, I also received education which helped me to accept my own diagnosis of hemophilia. For example, I met Julie, who told me about […]
I am who I am because of you. I usually hear that in reference to a partner or spouse, not a child. For the past 22 years, Max has given me more laughter, tears, and lessons than anyone I have ever known. I think many hemophilia parents might feel the same, whether we had kids […]
In May of this year Max, gave me factor for the first time. I was getting ready for HFA’s first regional Gears for Good bike ride in New Hampshire. In preparation, I was out riding my bike ten or more miles every chance I got. Max would often drop me in one spot and then […]
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 […]
There is something special about the hemophilia community. I have never experienced anything like it. I have friends that have children that are affected by diabetes, cancer, ADHD, and the autism spectrum, but even though these families are among extremely large support communities there is nothing like the hemophilia community. Even though we may be […]
By Sonji Wilkes A year ago this week, “Infusing Love: A Mom’s View” was born. Like any newborn’s first year, time has absolutely flown by. The wonderful thing about breathing life into something is the relationships and lessons you gain during the journey — “Infusing Love” has certainly taught me a few things along the […]
By Sonji Wilkes I never could have imagined that hearing the words, “Thomas has severe hemophilia,” would equate to being thrust into a world of inspirational people and unexpected acts of kindness. When Thomas was diagnosed and the doctor asked, “Do you have a good insurance plan?” my mind immediately focused on the challenges we […]
By Kimberly Haugstad Last month, we spent the July 4th holiday at a festival on the Mississippi River about three hours from home. We packed for the trip with factor, snacks, tissues, and a pillow in the car. Our plan was to take a dinner cruise on a paddleboat and watch the fireworks from the […]
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