Thank you, Barry!

On Friday I went for a 32-mile bike ride, on my usual route that winds through back roads of the north shore of Massachusetts, out to Plum Island to the ocean. It’s a ride I did with Barry Haarde twice, and I thought of how he pushed me into cycling longer than my usual 12 miles, and faster than my usual 13 mph. I actually clocked myself at 15.7 mph. Not bad for age 60. Last Sunday, August 12, we gather on a different beach, Odiorne Point in New Hampshire, to remember Barry and his amazing contributions to our community

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Shire’s pursuit of a zero-bleed future

The following is sponsored by Shire. Change is good, unless it affects your treatment. Here, we bring you interesting facts about Shire’s products…and reputation as an industry leader. While companies can undergo name changes in our community’s long history, the products remain the same, as does Shire’s commitment to patients. Laurie This is a paid

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Embracing the Unique

Previously printed in PEN, May 2018 When children are diagnosed with hemophilia, they are each given an essential diagnostic label: for example, hemophilia A or hemophilia B, severe, moderate, or mild. These labels originate from a lab analysis of the child’s blood. The diagnosis determines what type of factor replacement therapy each child will get.

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A “Bloody Good” Fundraiser

I travel a lot, and so often miss the events that happen in hemophilia close to home. So I was thrilled to know I could attend the New England Hemophilia Association (NEHA)’s fundraising event this past weekend. And it wasn’t a golf tournament (never touched a club in my life) or a cooking class (disaster!

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Introducing the new faces of Just B from IXINITY®

Who better to represent what it means to “Just B” with hemophilia than the people who are defining it in their daily lives? That’s why today, I’m excited to be one of the first to feature some of the new faces from our community who are joining the promotional campaign from Aptevo, makers of the

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100 Years Ago: Prince with Hemophilia Dies

This week is a very special: it’s the 100th anniversary of the death of the last Russian royal family, the end of the Romanovs. Special because not only did it lead to a massive change in world history, but it was also the death of the little prince with hemophilia, Alexis. Hemophilia appears to have

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Camp Yes I Can… and I Will!

Five years sure went by fast. That was the last time I attended the Dominican Republic hemophilia camp “Yo Sí Puedo!” (Yes, I Can!). I don’t understand how the time slipped by, especially when I have such a deep attachment to the DR, which is only a 4-hour plane ride away. The DR was the first

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