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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 […]

Infusing Love: Respecting Our Elders

October 5, 2016

I have been thinking a lot about my role in my bleeding disorder community as Max becomes an adult. Where is my place as a mom of an adult son with hemophilia? I have been given the gift of having a job that keeps me connected and involved, but what about the other old timers? […]

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 […]

Dear Addy: Carrier Testing

October 3, 2016

Dear Addy, Given our family history, my 8-year-old daughter could be a carrier of hemophilia. When should she get tested? Signed, Curious Carrier ____________________________________________________________________________________ Dear Curious Carrier, When to get tested is a personal decision, and you have a lot to consider. Importantly, consider that determining if your daughter is a carrier now could enhance […]

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: Aprendiendo a vivir con un nuevo diagn贸stic

September 21, 2016

von Willebrand Disease鈥 驴Qu茅 es eso? 驴Qu茅 clase de enfermedad tienen mis hijas? 驴Es contagioso? 驴Qu茅 le puede pasar? Esta y much铆simas preguntas m谩s fueron las que nos hicimos el d铆a en que la pediatra en Albany, Nueva York, diagnostic贸 nuestra hija menor, Juliemar, 8 a帽os a este momento, con von Willebrand Disease (vWd), tipo […]

Dear Addy: Advocacy Presentation

September 19, 2016

Dear Addy, I have to do a presentation in front of my eighth grade class on a cause I care about. I’d like to focus on bleeding disorders because I have von Willebrand Disease (vWD), but there’s so much information and I don鈥檛 know where to start. Help! Signed, Anxious for an A   Dear […]

Infusing Love: No (Wo)Man鈥檚 Land

September 14, 2016

My 10-year-old daughter, Natalie, has been officially DNA tested and is a carrier of the hemophilia gene. This wasn鈥檛 particularly surprising or upsetting to my husband or myself, or even Natalie. For a child, she has a remarkably good grasp on the genetics of hemophilia and she understands what it means to be a carrier. […]

PPTA Releases Updated Statement on Zika

September 13, 2016

The following is a summary of a statement released by the Plasma Protein Therapeutics Association (PPTA).聽To read the PPTA statement in full, click聽HERE. On September 8, 2016, PPTA聽issued an updated聽news release聽regarding the Zika virus (ZIKV) and plasma protein therapies. In the release, PPTA notes that: ZIKV is in a family of (lipid-enveloped) viruses that is […]

Sangamo BioSciences Receives Orphan Drug Designation From The FDA For SB-FIX

September 9, 2016

The following is excerpted from a press release from PRNewswire. Read the press release in it’s entirety聽here. Sangamo BioSciences, Inc.聽announced earlier this week that the U.S. Food and Drug Administration (FDA) has granted orphan drug designation to SB-FIX, the company’s zinc finger nuclease (ZFN)-mediated genome editing product candidate for the treatment of hemophilia B. Sangamo […]

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, […]

Dear Addy: Mental Health

September 5, 2016

Dear Addy, I’m concerned about how my bleeding disorder is effecting my mental health. However, it’s not clear that my insurance covers a therapist or counselor so I keep putting off seeking counseling or therapy. How important is mental health and where do I find the correct insurance information? Sincerely, Taking Control _________________________________________________________________________ Dear Control, […]

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 […]

Update #3: Zika Virus & Blood Supply

August 27, 2016

On August 26th, the US Food and Drug Administration issued a revised guidance to US blood banks addressing Recommendations for Reducing the Risk of Zika Virus Transmission by Blood and Blood Components. The Zika virus is transmitted primarily by the Aedes mosquito; it can also be spread by sexual contact. Although 4 out of 5 […]

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, […]

Baxalta Sponsors 63 Students in 2016-17

August 22, 2016

Baxalta, now part of Shire, has awarded scholarships to 63 students from 13 states, further adding to the list of recipients of its Education Advantage scholarship program. For the seventh consecutive year, Baxalta US Inc. is helping eligible students with a bleeding disorder offset the costs of higher education, advance their careers, and pursue their […]

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 […]

Intern Introspective: That’s a Wrap for Cami

August 12, 2016

Intern Introspective 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 […]

Voluntary Recalls Issued for Additional Lots of Kogenate FS Recombinant Clotting Factor Product

August 11, 2016

Bayer has announced a voluntary recall of additional聽lots of Kogenate聽FS with vial adapter. This is an update to the recall that was issued on July 25, 2016.聽All lot numbers affected by the July 25, 2016 recall and August 10, 2016 extension are: Product Lot Number Expiration Date Kogenate FS 250 IU Vial Adapter 270RV8X 12/19/2017 […]

Voluntary Recalls Issued for Additional Lots of Helixate FS Recombinant Clotting Factor Product

August 11, 2016

CSL Behring has announced a voluntary recall of additional聽lots of Helixate FS with vial adapter. This is an update to the recall that was issued on July 25, 2016.聽All lot numbers affected by the July 25, 2016 recall and August 10, 2016 extension are: Product Lot Number Expiration Date Helixate FS 250 IU 270P892 09/15/2016 […]

Update #2: Zika Virus & Blood Supply

August 10, 2016

For the past few months, HFA has been monitoring the progression of the Zika virus in the United States. Since the first reported cases of Zika virus reaching the United States in January, there have been thousands of additional cases. According to the Centers for Disease Control (CDC), the follow cases and causes of transmission […]

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 […]

First FDA-Approved Recombinant von Willebrand Factor, Vonvendi, Now Available for von Willebrand Disease

August 9, 2016

The following is excerpted from a press release from Baxalta, now a part of Shire. Read the press release in it’s entirety here. Shire has announced that Vonvendi [von Willebrand factor (Recombinant)], indicated for the on-demand treatment and control of bleeding episodes in adults (age 18 and older) diagnosed with von Willebrand disease, is now […]

Biogen Names New Spin Off, Bioverativ; Aiming for Early 2017 Launch

August 9, 2016

The following is an excerpt from FierceBiotech.com To read the article in full, click聽here. Biogen previously announced its plan to spin out its blood disorder products and candidates into a separate publicly traded company. The new company will be known as Bioverativ and is slated to launch in early 2017 and trade on the Nasdaq […]

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. […]

Shire Discontinues Hemophilia Gene Therapy Drug Development

August 4, 2016

The following is an excerpt from xconomy.com. To read the article in full, click here. On a conference call Tuesday, Shire聽CEO Flemming Ornskov said that the Dublin and Lexington, MA, company has discontinued development of BAX 335, an experimental gene therapy for hemophilia B.聽Prior to the merger of Baxalta and Shire, Baxalta had indicated plans […]

Infusing Love: Careful What You Say

August 3, 2016

I had a 鈥淗emo Mom鈥 moment of synchronicity earlier this summer. In my last Infusing Love post, 鈥淪uperheroes Need Rest Too,鈥 I shared a story about my oldest son, Marques, being in the hospital six years ago with a port infection while I was also taking care of his four 聽-month-old twin siblings. Marques eventually […]

Fit Factor: The Importance of a Whole Grain Diet

August 1, 2016

For many of us, our diet takes a back seat when our lives become busy and stressful. This leads us to consume more processed meals and snacks on the go. While these foods can be cheap and convenient, they have also been stripped of some of their nutritional value. Whole grain products rather than foods […]


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