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Infusing Love: A Picture is Worth a Thousand Words

August 17, 2016

I was cleaning out my closet recently and found an old picture of Nick stuffed in the pocket of a purse. My first thought was, 鈥淢an, he was a cute baby.鈥 My second thought was, 鈥淭hat was right before he had a spontaneous epidural bleed.鈥 Nick was eleven months old, in daycare, and not walking […]

FDA Requests Comments Regarding MSM Donor Deferral Policy

August 10, 2016

In January of this year, the Food and Drug Administration (FDA) revised its donor deferral policy surrounding men who have sex with men (MSM). On July 26, 2016, the FDA issued another request for comments regarding the MSM donor deferral policy. Current policy permits blood donations by MSM provided that the donor has not had […]

Infusing Love: Speaking Pok茅mon

August 10, 2016

Thirteen years ago, I had to learn a new language. Like any new language learning, it began with learning how to spell. Our day-old son was cradled in my arms when the phone rang in my hospital room. Thomas had been bleeding from his circumcision site since the day before, but I honestly wasn鈥檛 overly […]

Dear Addy: Back to School

August 8, 2016

Dear Addy, I’m preparing for my first year of college, which also means managing my hemophilia without my parents and local HTC. How do I make this a smooth transition? Is there anything I need to do before I get to school? Sincerely, Back to School Jitters ________________________________________________________________________________ Dear Jitters, Congratulations on this exciting transition. […]

Intern Introspective: That’s a Wrap for Eric

July 29, 2016

Earlier this summer we welcomed our summer policy & government relations interns to our DC office. Eric and Cami 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, Eric and Cami […]

CSL Behring Presents Phase 3 Data about Afstyla for Hemophilia A

July 27, 2016

Note: The below is an edited version of an article originally published on PR Newswire. The original release can be read in it’s entirety聽here. CSL Behring聽today presented data from a Phase III pivotal study of Afstyla聽[Antihemophilic Factor (Recombinant), Single Chain] in hemophilia A patients less than 12 years of age at the XXXII International Congress […]

Adynovate Phase 3 Efficacy and Safety Data in Children to be Presented

July 26, 2016

Note: The below is an edited version of an article originally published on PR Newswire. The original release can be read in it’s entirety here. _________________________________________________________________________________________ Shire will present additional data on the clinical experience of ADYNOVATE [Antihemophilic Factor (Recombinant), PEGylated], an extended half-life recombinant Factor VIII (rFVIII) replacement for hemophilia A, during the International […]

Alnylam Announces New Positive Interim Phase 1 Study Results for Fitusiran

July 26, 2016

Note: The below is an edited version of an article originally published on StreetInsider.com. The original release can be read in it’s entirety聽here. _________________________________________________________________________________________ Alnylam Pharmaceuticals, Inc. announced today new positive results from its ongoing Phase 1 study with Fitusiran, an investigational RNAi therapeutic targeting antithrombin for the treatment of hemophilia A and B and […]

Infusing Love: Defining Normal

July 26, 2016

鈥淗ow do you do it?鈥 鈥淚sn鈥檛 it difficult?鈥 鈥淒o you feel as though you need to wrap him in bubble wrap?鈥 鈥淗ow do you handle all of it?鈥 Most bleeding disorders moms have had to answer those questions or something similar to them. Questions of that nature do not surprise me anymore, because what parenting […]

HFA to Present CHOICE Project Data at World Federation of Hemophilia World Congress

July 21, 2016

HFA to Present CHOICE Project Data at World Federation of Hemophilia World Congress 聽The CHOICE Project was a first-of-its-kind data collection from people with hemophilia and other bleeding disorders. FOR IMMEDIATE RELEASE: July 21, 2016 Contact: Sonji Wilkes (202)-675-6984 or email at s.wilkes@hemophiliafed.org Hemophilia Federation of America (HFA) announced today that it will present new […]

Infusing Love: It鈥檚 About to Happen

July 19, 2016

When my son, Julian, began middle school, I kicked his hemophilia education into high gear.聽 He already knew the basics, but it was now time for him to learn how to call and order his factor, find the Hemophilia Treatment Center closest to him when on vacation, and to understand the importance of keeping the […]

HFA Continues Initiative with Centers for Disease Control and Prevention

July 19, 2016

The Hemophilia Federation of America (HFA), a national nonprofit headquartered in Washington, DC, has been awarded year three of a five-year cooperative agreement from the Centers for Disease Control and Prevention (CDC).聽 The award allows HFA to continue its mission of assisting and advocating for individuals and families in the bleeding disorders community by further […]

Intern Introspective: A Day in the Life

July 14, 2016

The halfway point of our Policy and Government Relations Internship program is an excellent time to take stock of our interns鈥 first month or so. In this Intern Introspective, Cami and Eric break down what an average day in the life looks like as an HFA intern.聽 ___________________________________________________________________________________________ 9 am to 10 am – Cami […]

Infusing Love: Away He Goes

July 13, 2016

During summer time, most parents feel they have some time before they have to think about an upcoming school year. However, if you are a parent of a child with hemophilia that just graduated from high school who is on his/her way to college, your worries start long before graduation. Our son Chris wanted to […]

Infusing Love: More than Max鈥檚 Mom

July 6, 2016

I am a modern day success story. I never thought I could have kids. Issues that I now know were caused from my own low factor levels had doctors telling me I 鈥渨ould probably never be able to have children.鈥 I set out to live my life as such. You know those lists of 鈥渉ave […]

Infusing Love: Paying It Forward

June 29, 2016

Bleeding disorders like hemophilia can mean days of isolation, worry, and pain. This life is stressful, but sometimes days are filled with hope and promise. Thankfully, we have had many of those hopeful and helpful moments. When Benny was a baby we had the good fortune to attend a local community picnic and meet a […]

Infusing Love: Because I am a Mom

June 22, 2016

Being the mom of a child with a bleeding disorder, I am used to questions and comments from others. More often than not, they are comical and provide a bit of relief, but there is one comment that seems to be set on repeat, and I am overwhelmed by it. The comment regularly comes after […]

Intern Introspective: Introducing Camila

June 17, 2016

Two weeks ago we introduced you to one of our Policy & Government Relations intern鈥檚, Eric. This week, we are pleased to feature our second summer intern, Camila. _______________________________________________________________________ What school do you attend? What is your major? I am a rising senior at the University of Richmond in Richmond, Virginia. I am completing a […]

Intern Introspective: Introducing Eric

June 3, 2016

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

Infusing Love: Out of the Mouths of Babes

May 25, 2016

When Thomas was in preschool, my family and I attended our first HFA Symposium. One of the educational sessions featured a panel of speakers who shared how to best prepare yourself, your child, and your school for a child with hemophilia. I took copious notes during that session because we were only two years away […]

Conquering Mountains

May 24, 2016

  My beautiful wife Jackie, and I have three boys: Desmond, 8-years-old, Liam, 5-years-old and Patrick, 3-years-old. Patrick has聽severe hemophilia A, and inhibitors. We live in middle Georgia. Until three years ago we聽knew nothing about hemophilia. We had no family history and it was the furthest thing from our minds as parents. We have two聽strong, […]

Infusing Love: My Blood Gang

May 18, 2016

Not related by blood. Family because of it. I had a button made with this quote when Max participated in the Beards for Bleeders fund-raiser two years ago. Something I have gained from the bleeding disorder community is an oddly mismatched, but amazing group of BFFs. My gang, as I like to call them. What […]

Infusing Love: I Get To Decide

May 4, 2016

I have an incredibly sweet and endearing child. I have been told on more than one occasion by his teachers that he has a sense for other children鈥檚 feelings, he knows when children are hurting, and he makes an effort to console them. I would love to take full credit for Logan鈥檚 sweet personality, but […]

Infusing Love: To Go or Not To Go

April 20, 2016

Daffodils blooming, grass growing, longer days, and camp applications arriving in the mail mark the arrival of spring. We have a top-notch medical camp facility just forty-five minutes from our home. Our local Children鈥檚 Hospital hematology/oncology department sends staff to run the camp and take care of the kids. Camp is a week of acceptance. […]

Infusing Love: Never Too Young To Advocate

April 13, 2016

For the past four years I have been participating in Hemophilia of South Carolina鈥檚 legislative days. During this annual event, I meet with our local representatives to share my experience of raising a child with a bleeding disorder and why it is important to support state programs that support our community. In prior years, I […]

Factor I Deficiency: A Voice for a Rare Community

April 8, 2016

My name is Rick Kelly, and my wife, Josie, I are the proud parents of Forrest. Forrest has a rare bleeding disorder called afibrinogenemia, or Factor I deficiency. This is the story of afibrinogenemia in three anecdotes that explain what afibrinogenemia is, the current state of treatment and its outlook for the future. In sharing […]

Infusing Love: We Keep on Ticking

April 6, 2016

My first national bleeding disorder conference was in New Orleans in 1998. I was overwhelmed at the over 2,000 individuals in attendance.聽My son was two and the enormity of hemophilia hit me hard when I saw men in wheelchairs, using walkers, and not moving their limbs with ease. What in the world was really in […]

Infusing Love: Family Ties

March 23, 2016

I鈥檓 adopted. My birth mother was a spontaneous carrier and when she put me up for adoption she didn鈥檛 know about hemophilia. When I met her about ten years ago I found out that I have five younger siblings. Two of my brothers, Edwin and Steven, had hemophilia and died from HIV contracted in the […]

Infusing Love: Overcoming Obstacles

March 16, 2016

Does anyone really like getting stuck with needles?聽 I don鈥檛 and I only gets labs drawn yearly and have my flu shot once a year.聽 When you have hemophilia and you have serious needle phobia, infusions don鈥檛 go well.聽 My son Chris, who is now 30, admits he still has severe needle phobia. Chris鈥檚 first […]

Infusing Love: A Double Edged Sword

March 9, 2016

There are three words that I have a love-hate relationship with. The words are spoken with good intention and they aren鈥檛 fancy, SAT prep course worthy words. They are simple words, in a simple sentence, but there鈥檚 no simple answer to the question. 鈥淗ow鈥檚 Thomas doing?鈥 It鈥檚 double-edged sword. It鈥檚 almost impossible for me to […]


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