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Infusing Love: This Is Us

March 22, 2017

  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 […]

Infusing Love: We Are Family

March 1, 2017

  Since my son Thomas was born thirteen years ago, I鈥檝e 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: Six Lessons Learned

February 15, 2017

  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 […]

Infusing Love: The Right Time

February 8, 2017

聽 There is this one conversation I鈥檝e 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鈥檚 early years should feel safe. However, we know they cannot stay innocent forever. We do want them to grow up to be […]

Millennials Get Busy- Advocacy for Young Adults

January 26, 2017

By Sarah Shinkman Learning how to advocate is an important life skill at any age. Whether you are practicing personal, peer, or group advocacy, you have the power to influence decisions that may affect you and others. HFA鈥檚 final Young Adult Hangout of 2016 featured two community advocates and a health insurance overview by Erin […]

Infusing Love: I鈥檒l Be Ready

January 25, 2017

Every day, I am reminded of how quickly time passes. My kids will only be little for a very short period of time. As working parents, we always tend to wish the days away in order to get to the weekends when we can take a deep breath, relax, and prep for another busy week […]

Okay, So What Can We Do?

January 24, 2017

By Lori Long and Sarah Shinkman “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” -Margaret Mead To find an example of the type of group Margaret Mead speaks about in her famous quote, look no further than our bleeding disorders community. […]

Community Member Spotlight: Shawn Nease, Organizer of Delves for Donors

January 9, 2017

  For the second year in a row, Shawn Nease organized a charity game of Dungeons & Dragons, a fantasy tabletop role-playing game, to raise money for HFA鈥檚 Helping Hands Program. Delves for Donors II: Out for More Blood offered gamers in Maryland and Eastern Pennsylvania the opportunity to purchase a seat in a two-hour […]

What is Helping Hands?

January 5, 2017

By Elaine Chan, MSW, MPH At any point, families living with a bleeding disorder can experience financial hardship because of their medical situation. HFA鈥檚 Helping Hands Program has become a safety net for thousands of families throughout the years. Helping Hands has provided many families with assistance for expenses like housing, utilities, and transportation. In […]

Infusing Love: Smells and Sounds

January 4, 2017

The senses of sound聽and smell are very powerful. Sometimes a smell can spark a memory of a wonderful meal simmering on a stove or the smell of the air from a perfect breeze on a spring day can transport us back. The sounds of elevators dinging as people anxiously wait their turn and the sliding […]

FitFactor: Toast for Good Health鈥ith Tea!

January 1, 2017

Now that winter is in full swing and the cold weather is upon us, it can be easy to forget to stay hydrated. However, just because you don鈥檛 feel thirsty, doesn鈥檛 meant your body has as much water as it needs. An easy way to hydrate (and to warm up) is by drinking tea. It […]

Infusing Love: Naughty or Nice 鈥 It鈥檚 a Choice

December 28, 2016

One of my co-workers often uses the phrase unconscious incompetence. It essentially means you just don鈥檛 know what you don鈥檛 know. The recent election surprised many. I鈥檒l stay away from the politics but I can鈥檛 help but reflect on the flippant comments made by a constitutional law professor post-election who referred to those who were […]

Infusing Love: Taking a Stand

December 7, 2016

  Every day we advocate for our children and ourselves. Our advocacy ranges on a small scale such as requesting a drink refill when we need one at restaurant to advocating for our children on a larger scale when requesting a doctor to infuse your child before any sort of x-ray when in an emergency […]

FitFactor: How Does Your List of Healthy Foods Compare with a Nutritionist鈥檚?

December 5, 2016

Do you feel that your views of what鈥檚 healthy align with the views of the experts? The New York Times published an interesting article a few months ago about public perception of what is 鈥渉ealthy鈥 and how these have changed over time. The study also highlighted what foods nutritionists believe to be the healthiest (and […]

Infusing Love: He Needed Me

November 23, 2016

I am exhausted. So very exhausted. I am pleading to myself that there isn鈥檛 something wrong; that the whimpers and small cries I hear as he sleeps aren鈥檛 there and that it is from sleep deprivation. I am drifting in and out of sleep on the baby glider that still graces his room even though […]

Infusing Love: Remembering John Reed

November 16, 2016

With the recent passing of John Reed, the hemophilia community lost a true champion. John was so many things to so many different people 鈥 husband, father, blood brother, friend. The list goes on and on, as does the list of adjectives one could use to describe John 鈥 caring, passionate, compassionate, smart, dedicated. I […]

Infusing Love: Finding His Voice

November 9, 2016

    Recently a friend shared a quote that really resonated with me: 鈥淎 negative mind will never give you a positive life.鈥 I recited that quote at least one hundred times the day she shared it. I even had to find a pretty Google image of the quote, print it off, and hang it […]

Caregiver Heroes: Kelly

November 3, 2016

In honor of National Caregiver Month, we鈥檒l be featuring 鈥淐aregiver Heroes鈥 throughout the month of November. While all in the bleeding disorders community are heroes in their own special ways, these folks are being given a special shout-out for the ways they take care of their loved ones and themselves. Meet Kelly from Nevada, who […]

Infusing Love: Goodbye, My Friend

November 3, 2016

Dear Port: Over the past five years you were a big part of how well I did infusing my son, Laithan. As much as he would fight me during infusions by moving around, I knew that I could always count on you to work. Don鈥檛 blame yourself for having to be removed! In five years […]

FitFactor: The Benefits of Hitting the Weight Room

October 31, 2016

Weight training plays an important role in keeping your body fit and healthy. It鈥檚 a great way for people with bleeding disorders to strengthen muscles and joints and by doing so, reduce the frequency and severity of bleeds. We spoke with Michael Zolotnitsky, Doctor of Physical Therapy, about the benefits of weight training and his […]

Dear Addy: Joint Health

October 31, 2016

  Dear Addy, I鈥檓 27 years old with severe hemophilia B. I鈥檓 caring for myself and my joints, including infusing to prevent bleeds as much as possible. As you know, with time, joints just can鈥檛 move as freely. Is there anything I can do? Do you recommend any exercises that can improve movement? Signed, Achy […]

Infusing Love: Sisterly Bond

October 26, 2016

I adore the 鈥淥n This Day鈥 feature on Facebook. It is a wonderful way to look back at the past to see what has happened on any given day in past years. It often reminds me of those moments that may have slipped my mind in a blur of parenting madness over the last fifteen […]

Prescription Benefit Program Changes for Recombinant Clotting Factor Product

October 18, 2016

  It has come to our attention that Helixate FS, a recombinant clotting factor product sold and distributed by CSL Behring, is being removed from prescription benefit programs for a limited number of聽patients using CVS/Caremark effective January 1, 2017. Patients currently using Helixate FS who have the “Advanced Control Formulary” plan with聽CVS/Caremark will have the […]

Blood Journal: Analysis of 13 Years of Hemophilia Patient Data

October 9, 2016

A recent article in Blood, a publication of the American Society of Hematology, examines thirteen years of surveillance data collected by the Centers for Disease Control and Prevention regarding patient outcomes for men with severe hemophilia. Among the key points: Prospectively collected data on demographics, complications, and mortality are described for 4899 US men with […]

FitFactor: Get Your Gears Going!

October 3, 2016

In late September, a group of community members, HFA staff, and sponsors rode, by bike, 156 miles from West Virginia to Washington, D.C. following the old mule tracks next to the C & O Canal. We started out on a Friday in West Virginia and finished at the canal鈥檚 beginning in Georgetown on Sunday, spending […]

Infusing Love: Growing Our Family

September 28, 2016

Time moves so quickly. As adults we blink and a year has passed. As kids, we couldn鈥檛 wait to be adults. I feel like it was just yesterday that we were adjusting to life with one itty-bitty baby, with a chronic condition. Now we are in a routine, his disorder is well managed, and he […]

Infusing Love: A Mom Intervention

September 7, 2016

Benny starts high school this week. How did that happen? When I started working at HFA he was in kindergarten. I remember being amazed at his astounding ability to put 100 piece puzzles together at 5 years old and spend hours building things with Legos. At the start of second grade, despite untold hours trying, […]

FitFactor: Six Steps to Sleeping Well

September 5, 2016

When it comes to health and lifestyles, many of us do not put sleep at the top of our priority list. We may not realize the numerous benefits that sleep has on our bodies and minds. Not only does it give us the rest we need to replace the energy expended from the day but […]

Infusing Love: Thank You to Our Teachers

August 31, 2016

Through out the school year I have such a hard time balancing being the mom that every teacher or administrator loves to communicate with verses being the mom that everyone wants to run away from. I decided to sit down and write exactly what I wish I could say to every teacher or administrator Scarlett […]

Dear Addy: Back to School Secondary Education

August 22, 2016

  Dear Addy, My son is starting kindergarten this fall and I鈥檓 concerned about what will happen if he has a bleed at school. What are his rights at school and how do I ensure he has the same opportunities as other students? Sincerely, Proactive Parent ______________________________________________________________________________________________________________________________________________________________________________________________________________ Dear Proactive, With the new school year approaching, […]


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