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Hiking for Hemophilia

Yesterday was a beautiful, sunny, crisp fall day in New England, and perfect for a hike. Hiking is even better when you can hike to help! The Hemophilia Alliance of Maine (HAM) hosted its fourth annual Hike4HAM, at Camden Hills State Park, where we would hike up Mt. Battie. A one-hour hike up offered spectacular views of Penobscot Bay, a way to earn a great lunch, and enjoy the company of our “family,” the hemophilia community. This was really special for me. For years I’ve been promising the dedicated staff at HAM I’d try to make their walk, or hike, or

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He Planted Kindness: Kyle Callahan

 A tree is known by its fruit; a man by his deeds. A good deed is never lost; he who sows courtesy reaps friendship, and he who plants kindness gathers love.  —St. Basil I’m in Nashville, waiting to board my flight home, leaving behind many hemophilia community members who came to pay tribute to a

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How does your school-age child understand hemophilia?

Published in August 2018 PEN With the start of the school year comes new teachers, nurses, and caretakers for your child. You may be explaining to many adults what hemophilia is and how they should properly respond if your child has an issue. But, how do you go about teaching your child about their hemophilia?

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Begging Your Pardon, Ma’am

This past week I received two messages in response to our August issue of PEN, from two different people, both concerned about our predominant use of the word “he” whenever we wrote about hemophilia in the issue. Was it an oversight? Aren’t we aware of the growing movement to get women recognized not just as

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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

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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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