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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 […]

Patients’ Genetic Privacy Threatened by H.R. 1313

Congress is currently considering legislation that would undermine patient privacy and workplace non-discrimination protections for individuals and families affected by genetic conditions. This legislation, the Preserving Employee Wellness Programs Act (H.R.1313) was approved by a House committee earlier this month. Under existing law, an employer can run a “voluntary” workplace wellness program – and can […]

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Dear Addy: Nation’s Blood Supply

Dear Addy, How is the nation’s blood supply managed, and how do we know if it’s safe? Sincerely, Searching for the Best Blood Dear Searching, The US blood supply system is managed by a number of major organizations, including federal agencies. They oversee two types of blood collection activities: (1) the collection of the cellular […]

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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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Infusing Love: Being Bored Isn’t A Bad Thing

I always look forward to reading the weekly Infusing Love Mom Blogs. I enjoy reading about the lives of other caregivers and their perspective on their particular journey or story they take the time to share with readers. I usually have something noteworthy to write about. With three active kids who have chronic illnesses, one […]

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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 […]

Fit Factor: Tips to Take Your Exercise Routine on Vacation with You!

Whether you are escaping the winter weather for some R&R by the beach, or heading to a relative’s home to catch up, travel disrupts your normal schedule and can make it harder to stay on top of your health and fitness routine. Working out is often easily forgotten on vacation as other activities take priority. […]

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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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Assisting and Advocating for the Bleeding Disorders Community