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caz-march-2017

Infusing Love: This Is Us

  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 […]

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Infusing Love: ¡Sé agradecido!

No importa en la circunstancia en que nos encontremos siempre tenemos una razón por la cual estar agradecidos.   A lo largo de mi carrera como maestra de escuela elemental por más de 15 años y ahora como coordinadora de programas en HFA, he tenido la oportunidad de conocer a muchas personas. Maravillosas personas con características […]

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Dear Addy: Advocacy Committee

Dear Addy, I really want to help my local organization grow its advocacy efforts by starting a committee. However, I’m overwhelmed by the process. Where should I start, and how do I maintain an advocacy committee? Signed, Committee Quandary Dear Quandary, Creating or joining an advocacy committee is a great role if you are interested […]

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Infusing Love: We Are Family

  Since my son Thomas was born thirteen years ago, I’ve come to think of the bleeding disorders community as family. Relatively speaking, that feeling came to us very quickly after meeting people in the community. My husband and I jumped right into attending events, volunteering, and generally asking questions of medical providers and anyone […]

Infusing Love: Laugh or Cry

Anyone who knows me or has read any of my previous blogs, knows that our household basically revolves around baseball. If the weather is nice and I’m not at work, I’m at the baseball field. Sometimes it makes life a little crazy, but it makes Nick really happy and that is what’s most important. My […]

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Dear Addy: Social Media

Dear Addy, I often hear about using social media to engage policymakers and spread awareness to friends. Does this really work? How can I advocate on social media without being annoying or preachy? Signed, Social Media Maven Dear Maven, Social media can be an excellent platform to raise awareness for an issue or cause you […]

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Infusing Love: Six Lessons Learned

  A lot has changed since my daughter was diagnosed with a platelet storage pool deficiency in 2011. Initially, there was little information and case studies to look to for reassurance. Not having a treatment plan led to many fears, doubts, and unknowns and wondering if I could make it through another injury or trip […]

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Infusing Love: The Right Time

  There is this one conversation I’ve had repeatedly with dozens of parents over the past ten years. It always revolves around our desire to be protective and shelter our kids. A child’s early years should feel safe. However, we know they cannot stay innocent forever. We do want them to grow up to be […]

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Dear Addy: Out-of-Pocket Expenses

  Dear Addy, I just got my daughter’s January EOB, and I realized that my family is now responsible for up to $14,300 in out-of-pocket (OOP) expenses. Why did this amount go up $600, even though we kept our same insurance? And how can I afford this?!? HELP! Signed, Anxious about OOPs Dear Anxious, High […]

Infusing Love: Bleeds Hurt

  A couple of months ago, my 8th grade son with hemophilia had “Future Bruin” night at the high school he will be attending next year. Any time we have to think about making a school move with him it induces anxiety for me as I start thinking about the process we’ll have to go […]

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