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Infusing Love: There’s No Quitting

October 26, 2018

About a year or so ago, I thought it would be a great idea for HFA to apply to be a Charity Partner for the Marine Corp Marathon in Washington, D.C.  When we were selected, I was beyond excited.  Running a marathon was on my bucket list.  I know, really cliché, but true.  It was […]

Infusing Love: Hemo Dads

June 20, 2018

This post is written as a special shout-out to my husband; a hemo dad, and all the other caregivers who have patience just like my husband Shane. I’m pretty lucky to have a husband who is very involved in Maddox’s infusions. My husband, Shane, gives Maddox his infusions three times a week. As a full-time […]

HFA RECOGNIZES CONGRESSIONAL REPRESENTATIVES AS 2018 CHAMPIONS

June 12, 2018

On June 12,2018, we hosted our 5th Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day. . With that in mind, patient representatives asked Senators and Representatives to protect affordable coverage for people with pre-existing conditions, ensure that insurance plans provide meaningful coverage and an appropriate scope of health benefits; protect people against potentially […]

Infusing Love: Your Spark Is My Why

April 25, 2018

Every year at Symposium, there is some special moment that defines that year’s event for me. As we kick off our 2018 event tomorrow, I’m reflecting back on my favorite memories from the last five years of Symposium: 2013: Frisco, TX (I actually have two favorite memories from this year.)   This picture encapsulates our […]

Infusing Love: My Love/Hate Relationship

April 11, 2018

Some of us love exercise.  Some of us (me!) hate it but love it when you’re done.  What do you find to be the hardest part of exercising? A lot of times it’s finding the time. As moms we’re pulled in a thousand different directions all throughout the day.  Between jobs, kids, and spouses, there is never […]

Infusing Love: Port to Adulthood

January 3, 2018

I have seen signs for the last few years, but on a cold day just before Christmas, I saw my 14-year-old son not as a little boy, but as a young man. There wasn’t anything extraordinary happening in the moment. He sat at one end of our sectional couch and I was sitting on the […]

Infusing Love: Different Opinions Don’t Mean They Are Wrong

December 27, 2017

“So, he’s still wearing the helmet?” The question, posed by HTC staff at our recent annual visit gave me pause. Yes, my son is almost 5 years old and still wearing his helmet any time his feet are on the floor. I know this is a controversial topic ­ I’ve seen the comment threads on […]

HFA Research Presents at ASH 2017

December 21, 2017

HFA’s Research Team gave and received early an holiday gift this year: knowledge. We attended the 59th annual meeting of the American Society of Hematology (ASH) in Atlanta, Georgia, December 9-12. The unofficial song of the meeting was “Let it Snow” as that (along with the once standing Georgia Dome) is what was on the […]

Infusing Love: In Appreciation of Providers

December 20, 2017

It is safe to say that most of hemophilia has been unexpected. Even when you are planning for the unexpected you get another unexpected in its place, sort of a Murphy’s Law type deal. And yet, I am always finding things about hemophilia that I never expected from our experience. One of the most profound […]

Infusing Love: Through the Smoke

December 13, 2017

It’s been two months since wildfires ripped through Northern California leaving a path of destruction in Sonoma and Napa counties like I’ve never seen before and leaving a scar on all of our hearts. I got to see firsthand the importance of community and was proud to see our bleeding disorder community come together to […]

Infusing Love: The Thief of Joy

December 5, 2017

Some of the best sessions I have attended at conferences have been rap sessions. These sessions bring together certain sub-groups in the bleeding disorder community and allow them to have open conversations, asking questions and sharing information with each other. At one rap session, many years ago, a mom in the parents rap session, was […]

Infusing Love: A Season of Gratitude

November 22, 2017

I get some pretty stunned responses when I tell family and friends that I am grateful for hemophilia.  They can’t understand how it is possible that I can be thankful that my son, Thomas, has unexpected, ill-timed, and painful bleeds.  How could anyone find good in dealing with a nonsensical insurance company?  Obviously, I could […]

Genentech Releases Phase III HAVEN 3 Results

November 20, 2017

The following is an edited excerpt from a press release from Genentech. To read the press release in full, click here. Genentech, a member of the Roche Group, announced positive results from the Phase III HAVEN 3 study evaluating Hemlibra (emicizumab-kxwh) in adults and adolescents (aged 12 years or older) with hemophilia A without inhibitors to […]

Infusing Love: Big Hearts

November 15, 2017

The past six months have been hard. Like hemophilia was managing us instead of us managing hemophilia. I can’t remember the amount of times I sobbed out of frustration, fear and being powerless to help my son. We are still muddling through and each day is a battle. A battle where it seems like we […]

Young Adult Podcast: Grocery Shopping on a Shoestring Budget: How to Choose Healthy Foods without Breaking the Bank

November 3, 2017

By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits! Our guests on this podcast are Kathryn Clark, a retired dietician, and Eric Burgeson, an active young adult with hemophilia. Kathryn and Eric iscuss ways to keep costs low at the grocery store […]

Infusing Love: Caregiver to Caregiver

November 1, 2017

If you look up National Caregiver’s month on your computer, you will find several items from the Caregivers Action Network (CAN) before anything else. If you look through the stories, tips and suggestions you will see that most of them relate to adult children caring for parents. You can find the 2016 proclamation from President […]

Infusing Love: An Unexpected Lesson

October 25, 2017

I lost my job on a Monday. The following Tuesday, I was making the hour-long trek to our HTC for bi-monthly prophy for my 15 month old son, Ben. I had a lot of time to think about what had just happened, what in the world I was going to do, and where to go […]

Young Adult Podcast Series: Getting Tech-y with It: A Hemophiliacs Fitness Journey

October 19, 2017

By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits! Our guest on this podcast is James DeFilippi, a triathlete who tells us everything that goes into his training, from his training regimen to the technology he uses to work […]

Bayer Issues Voluntary Recall of Kogenate FS

October 18, 2017

Note: The following is the full text of an email communication received by HFA from Bayer HealthCare Pharmaceuticals: Bayer in consultation with the FDA has voluntarily recalled approximately 300 vials (part of one lot) of Kogenate® FS, Antihemophilic Factor (Recombinant) in the U.S. as an excipient, used to stabilize the product during manufacturing, may not conform […]

Infusing Love: In This Moment

October 4, 2017

It’s hard to envision what life is going to look like for my little Maddox when he enters preschool or elementary school in a few years. Right now I focus on the moment and each day as Maddox gets older. He had his first birthday last week and off he went. He took his first […]

FitFactor: Stay Motivated for Fitness

October 3, 2017

For many of us, the biggest challenge to getting physical activity is just putting our minds to it. We all know how easy it is to talk ourselves out of something – and exercise is no exception. There are tons of ways we can keep our bodies healthy and active, so it doesn’t need to […]

Infusing Love: we: Door 1, Nicholas 0

September 27, 2017

Do you know those moments when you think, “all is right in our lives today?” We have had a few of those moments recently. We had a horribly tough year in 2016. It just seemed that whichever way we looked, something rough was happening to us or our extended family members. 2017 has been a […]

Infusing Love: Sigue tus sueños…

September 21, 2017

Todos los años celebramos el mes de la hispanidad en Estados Unidos (Hispanic Heritage Month en inglés). El mes de la hispanidad comienza en 15 de septiembre y termina en 15 de octubre. Este mes es para celebrar las tradiciones, celebramos la cultura y todos los logros de los hispanos de este país. Los hispanos […]

ACTION ALERT: Graham-Cassidy-Heller-Johnson bill

September 19, 2017

Your access to healthcare is at risk. The Senate is currently considering another bill to repeal the Affordable Care Act (ACA), sponsored by Sens. Cassidy and Graham. Congress only has until September 30th to act on this measure. We must work together to defeat this bill. Why should you take action? The Graham-Cassidy legislation would harm […]

Infusing Love: Overcoming Pain

September 13, 2017

  When I hear the word “pain” I immediately relate.  We all know pain and its many forms. But do we know how to move past the physical hurt and the emotional guilt?  The reality of our world is that pain is a part of life – we can dwell in suffering or we can […]

Infusing Love: The Holidays Are Coming

September 8, 2017

The holidays are right around the corner. Ask any mom of a child with hemophilia and we will all attest to the same thing – with holidays come bleeds! There is no medical explanation for this crazy phenomenon, but sure seems true for many. For us, it always started with Halloween and lasted until the […]

FitFactor: Men’s Health — Simple Tips to Live By

August 8, 2017

Even though Men’s Health Month was in June, we can always take steps towards a healthier lifestyle no matter what time of year it is. In general, men experience poorer health and die younger than women in the U.S., according to the Department of Health and Human Services. The points below are important for all […]

Dear Addy: Project CALLS 2

August 8, 2017

Dear Addy, I’m having trouble with my health insurance, which is making it difficult to manage my bleeding disorder. What can I do to make my concerns heard? Signed, Help Wanted Dear Help, Thank you for reaching out to HFA about the trouble you’re having with your health insurance. You are not alone in your […]

ACTION ALERT: Vote Likely on Tuesday, July 25!

July 24, 2017

On Tuesday, the Senate will likely vote on a “Motion to Proceed,” which is the first step to open debate on health reform legislation.  If the motion passes, they may consider a 2015 bill that will repeal parts of the Affordable Care Act without replacing it, or the Better Care Reconciliation Act (BCRA), the recent […]

Infusing Love: Meet Kristi

July 19, 2017

  Happy summer to all! I’m honored to join the ranks of the Infusing Love bloggers, and appreciate the opportunity to share my family’s stories and perspectives on living with hemophilia. Our family includes myself, my husband Nick, and our son, Liam, who is 4 ½. We live in Vermont right on the border with […]


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