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Community Voices

Infusing Love: A Back to School Shopping List

August 23, 2017

Buying school supplies prior to the beginning of each school year is a rite of passage. Until my kids got to high school, I was more than happy to take advantage of the school supply kits offered by our school. Even so, each year, I still have to make multiple trips to the store for […]

Dear Addy: Step Therapy 2

August 21, 2017

Dear Addy, My insurance company is trying to make me go through step therapy to get access to the treatment product I need! Are they practicing medicine without a license and is it illegal? Sincerely, Feeling Pressured Dear Pressured, There is no clear legal answer to your question: is an insurer 鈥減racticing medicine without a […]

Infusing Love: Knowing How and When to Advocate

August 17, 2017

This past May our family was invited to attend the HFA Patient Fly-In to Washington, DC. The patients and caregivers were briefed on the talking points the evening before our scheduled meetings with our Senators and Representatives. As you know, health care is a hot topic and there were many talking points that needed to […]

Infusing Love: Pondering Ports

August 9, 2017

  With a new diagnosis of hemophilia my world was turned upside down. What’s only been 4 months since Maddox was diagnosed feels like a year or two. I feel like I’ve grown so much in just a few months. I have put my life vest on and jumped right in. While, sometimes I鈥檓 afraid […]

Dear Addy: Project CALLS 2

August 8, 2017

Dear Addy, I鈥檓 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鈥檙e having with your health insurance. You are not alone in your […]

Infusing Love: The Writing is on The Chalkboard

August 2, 2017

As I walk through the aisles of our local office supply store, I can鈥檛 help but to get a tinge of sadness. The smell of fresh paper, pens, pencils, and crayons are enough for this former teacher to break down right there in the middle of Office Depot. Not that I am unhappy doing what […]

Intern Introspective: That鈥檚 a Wrap for La鈥橞rittinee and Paul

July 28, 2017

Earlier this summer we welcomed our summer policy and government relations interns to our D.C. office. La鈥橞rittinee and Paul are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, La鈥橞rittinee and Paul: […]

Infusing Love: Mama Is Always Right

July 28, 2017

  The early years of my motherhood experience were pretty lonely. We lived across the country from our extended family and I didn鈥檛 know any one in the neighborhood, and frankly, the other moms I did meet weren鈥檛 exactly people I wanted to socialize with. My go-to鈥檚 for parenting advice were books I had bought […]

Dear Addy: PRIDE Project

July 24, 2017

Dear Addy, I have heard of HFA鈥檚 PRIDE Project but am not clear on how I can participate and what I can learn from my participation. As a bleeding disorders community member, what do I need to know about the project and can I really do research? Signed, Researching Research Dear Researcher, You do research […]

Intern Introspective: Plasma Donation Center Tour

July 21, 2017

Nearing the end of their 10-week internship, La鈥橞rittinee and Paul got an opportunity to tour Grifol鈥檚 plasma collection center in Frederick, Maryland. Centers like this collect plasma from donors and then return the red blood cells to the donor in one sitting. The plasma, which undergoes several levels of strict testing, is then pooled and […]

Infusing Love: Meet Kristi

July 19, 2017

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

Infusing Love: Not What I Had Planned

July 12, 2017

I like control. I like order. I like a plan. I like lists. Not in an overly aggressive way, but in a way that makes me feel calm. If I can plan for it, I can feel in control of it. Hemophilia does not work this way. Hemophilia and all the moving parts involved with […]

Dear Addy: Hematology Visit

July 10, 2017

Dear Addy, I often become flustered when I visit my hematologist, despite having lots of questions. Can you offer guidance on how to prepare for my visit so I get my questions answered? Signed, Stressed by Appointment Dear Stressed, Any doctor visit can generate a case of nerves. If you have butterflies in your stomach […]

Intern Introspective: A Week in the Life

June 30, 2017

The halfway point of our Policy and Government Relations Internship program is an excellent time for the interns to reflect on the first five weeks of their internship. La鈥橞rittinee and Paul break down what an average week looks like for them as an HFA intern. Paul: After our first action packed week of the internship […]

Infusing Love: As He Climbs On the Bus

June 28, 2017

By now, for most of us another school year has come to an end. For me this usually means complete and utter joy! No more homework, no more early wakes up to catch the bus, no more worrying about clean PE uniforms, and the list goes on and on. Nicholas just finished the 8th grade. […]

Dear Addy: Coverage for New Therapies

June 26, 2017

Dear Addy, I want to switch to a new hemophilia therapy and, though my doctor has prescribed the product, my insurer won’t authorize coverage. How can I get this covered? Signed, Concerned Consumer Dear Consumer, When new therapies come on the market, there is often a lag before health plans add those products to their […]

Infusing Love: Change of Plans

June 21, 2017

  It’s that time of year when boys and girls go to summer camp. Church camp, art camp, band camp, sports camp and yes, hemophilia camps. My idea of camping and “roughing it” is when we stay at a hotel that is not a “suite.” When my oldest son, Julian, was nearing the age of […]

Fatherhood & Hemophilia

June 18, 2017

Being a father has been the most challenging and most rewarding task God has ever asked of me. I would do it all over again in a heartbeat. I have found the relationship between my daughter, Bethany, and me to be such paradox at times, but now that we鈥檙e both adults, I can鈥檛 express how […]

Infusing Love: Wonder Women

June 14, 2017

  Motherhood is hard work, and often, moms don鈥檛 give themselves credit where credit is due. As moms, we need to brag about ourselves and celebrate our victories. We asked our Infusing Love bloggers to share those motherhood moments where they thought to themselves, 鈥淵eah, I鈥檓 owning this mom thing.鈥 Try to think of your […]

Dear Addy: History

June 12, 2017

Dear Addy, My daughter has informed me that most people in her generation don’t know anything about AIDS, Hemophilia, or Ryan White. I find this pretty upsetting. How can we educate the next generation about the history of the bleeding disorders community? Sincerely, Old Enough to Remember Dear Remembrance, This is a great question and […]

Infusing Love: Meet Stephanie

June 8, 2017

As parents, we are always talking about the safety of our kids, families, cars, food, neighborhoods, churches, malls etc.聽聽Let鈥檚 face it: our world is not as “safe” as it used to be, except when it comes to hemophilia! As a mother of a very active two-year-old, a sister of a stubborn 40-year-old, and the niece […]

Intern Introspective: Introducing La鈥橞rittinee and Paul

June 2, 2017

Earlier this year, we opened applications for a ten-week policy & government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! La鈥橞rittinee & Paul are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in the field of […]

Infusing Love: Meet Lindsay

May 31, 2017

Nine years ago, I was blessed with my oldest son Zachary. With each passing day, he grows into an exceptional young man with love and compassion for everyone he meets. His smile and dimples are infectious and can melt any mother鈥檚 heart. Zachary had been the only child for four years when my husband and […]

Dear Addy: Virtual Hill Day

May 30, 2017

Dear Addy, I saw a lot of activity on social media last week about HFA鈥檚 Virtual Hill Day and Patient Fly-in. Can I still participate? Signed, Always an Advocate Dear Advocate, YES! On May 24th, HFA organized a Virtual Hill Day, in conjunction with meetings on Capitol Hill, to encourage community members nationwide to contact […]

Infusing Love: Meet Heather, a Brand New Hemo Mom

May 26, 2017

  My life was flipped upside down nearly 3 weeks ago when I became a hemophilia mom. To say that I was shocked is a true understatement. What I thought were little bruises because I had shoved my son Maddox into his bumbo seat, turned out to be a disorder that would affect my baby […]

Infusing Love: Hit the Road, Jack

May 18, 2017

  Every hemo mom has the day she must send her child off on an overnight school trip, trusting that she has done everything she can to prepare her child for the responsibility of being on their own. My time came a few weeks ago when my son went to Orlando with his Sing Out […]

Dear Addy: Life Insurance

May 15, 2017

Dear Addy, I’m applying for life insurance, but I’m either ineligible or being told I have to pay three times the normal rate because I have hemophilia. Is this typical with a rare disorder, and is there anything I can do about it? Signed, Planning Ahead Dear Planning, Unfortunately, as you鈥檝e found, your health status […]

Infusing Love: A or B (Arthritis or Bleed?)

May 10, 2017

Back in the 鈥渙ld days鈥 before prophylaxis (prophy), hemophiliacs were treated on demand when they had a bleed. Max is just old enough to fall into that category so he didn鈥檛 switch to prophy until he was five years old. By then he had already had enough bleeds in his left ankle that the damage […]

Infusing Love: Life Imitates Art

May 3, 2017

When ABC premiered, 鈥淪peechless鈥 last fall, I wasn鈥檛 sure if it would meet my expectations. Would it show special needs parenting and family life in a realistic, often sarcastic way, or would it have the feel of an afterschool special? I鈥檓 happy to say it鈥檚 readily become one of a handful of shows we watch […]

Dear Addy: Symposium

May 1, 2017

Dear Addy, I attended Symposium in April and gained a lot from the advocacy sessions. I want to incorporate what I learned at Symposium into my regular routine. What recommendations do you have for making advocacy an everyday activity? Signed, Maintaining the Momentum Dear Momentum, Thanks for attending HFA鈥檚 Symposium last month in Providence. It鈥檚 […]


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