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NY Times: Peanut Called a Hemophilia Aid (Circa 1960)

January 23, 2014

漏聽New York Times, 1960,聽By: John A. Osmundsen The lowly peanut may become the conqueror of the disease of kings. Something in the meat of that seed, an American scientist has found, appears to be capable of stemming the flow of blood in hemophilia. This is the so-called 鈥渂leeders鈥 disease,鈥 notably associated with royal families. The […]

Infusing Love: New Year, New Life

January 22, 2014

Yesterday I had a job interview at Dartmouth College. As I go forward with my life, I am learning who the new me is. I just spent 21 years being a full time, single caregiver for a guy with hemophilia. It seems so sudden that I am now just me. So what does a person […]

Flint-based Diplomat Acquires American Homecare Federation

January 14, 2014

FLINT, MI (Michigan Live) — Flint-based Diplomat, the country鈥檚 largest independent specialty pharmacy, says it has acquired American Homecare Federation, a provider of hemophilia pharmacy services. Diplomat made the announcement in a news release Monday, Jan. 13, saying all AHF employees will continue in their current roles. AHF is based in Enfield, Conn. 鈥淒iplomat is […]

Dear Addy: Washington Days

January 13, 2014

                Dear Addy, I am going to NHF鈥檚 Washington Days and I have an opportunity to speak with my Congress person about hemophilia issues. I am worried I don鈥檛 know enough and that my Congress person will not take me seriously. How do I prepare for this meeting? […]

A Caregiver’s Perspective: My Life As I Know It

January 9, 2014

My husband has a bleeding disorder called hemophilia. Prior to beginning a relationship with him, I did not have an understanding of hemophilia and the intrusive nature it can have on someone鈥檚 life and marriage. My minuscule understanding of hemophilia only consisted of someone 鈥渂leeding a lot鈥 if they had an open wound. It was […]

Biogen Idec Announce Global Collaboration to Develop Treatment for Hemoglobinopathies

January 9, 2014

Cambridge, Mass and Richmond, Calif. 鈥 Biogen Idec (NASDAQ:BIIB) and Sangamo BioSciences, Inc. (NASDAQ: SGMO) announced today an exclusive worldwide collaboration and license agreement focused on the development of therapeutics for hemoglobinopathies, inherited conditions that result from the abnormal structure or underproduction of hemoglobin. The agreement will enable Biogen Idec to further enhance its expertise […]

(You Gotta) Fight for Your Right (to Party)

January 8, 2014

Nora unknowingly opened a floodgate when she did not share some candy with Thomas one afternoon. He got super moody. I left it alone for a bit, but I could hear him trying not to cry in the backseat of the car. When we pulled in the driveway, I sent the girls inside and asked […]

Girls Have Hemophilia, Too!

January 7, 2014

My childhood was relatively normal. I grew up the oldest of three children, had two caring and attentive parents, and did well in school. As a family, we went on regular vacations. I faced many challenges growing up and did not know at the time that they were related to an undiagnosed bleeding disorder. There […]

FDA Approves Treatment Option for Congenital Factor XIII A-Subunit Deficiency

January 6, 2014

Novo Nordisk is pleased to announce that the US Food and Drug Administration (FDA) has approved TRETTEN庐 (Coagulation Factor XIII A-Subunit [Recombinant]) for the routine prophylaxis of bleeding in people with congenital factor XIII (FXIII) A-subunit deficiency, one of the rarest inherited bleeding disorders. TRETTEN庐 is the only recombinant treatment for the disease. Patients with […]

NBC News: Flu Worsens, Hitting Younger Adults Hard

January 3, 2014

Source: NBC News By: Cydney Weiner and Maggie FoxNBC News It鈥檚 flu season, all right. Federal officials reported on Friday that influenza activity is widespread in 25 states and regional in 20 more, although it鈥檚 not at epidemic levels yet. 鈥淲e鈥檙e seeing pretty substantial increases in activity, but they鈥檙e not unexpected,鈥 says Dr. Michael Jhung, […]

Infusing Love: Getting the House Shipshape by 鈥楽hipping鈥 Out

January 1, 2014

There is something magical about traditions, particularly at this time of year as we say goodbye to the old and bring in the new.聽 It can be such a pull to make sure a family or friendship customs happen successfully each year! We have many traditions in our family and one definitely comes to mind […]

Get in Gear in the New Year!!

December 31, 2013

The time is now!聽 The New Year is upon us and it is time to take charge of your health! It is so important for individuals with bleeding disorders to keep their joints and bodies healthy in order to reduce the number of bleeds and to reduce the risk of developing other diseases and illnesses.聽 […]

How the Port Infection Nearly Stole Christmas

December 25, 2013

We very nearly spent Christmas in the hospital last year, when Thomas developed a port infection the week before. If you think December is a crazy time of year, try adding in a long hospital stay 鈥 you quickly realize how much you aren鈥檛 getting done while you sit by your kid鈥檚 bedside. I had […]

Dear Addy: Marketplace Deadlines

December 23, 2013

Dear Readers, Thank you for all the questions you have asked since the launch of Dear Addy in July of this year. Please keep them coming! HFA wants you to be able to make informed decisions about your health and the health of your family. To close out the year, I want to follow-up on […]

Inhibitor Family Camp: Our Own Kind of Oz

December 20, 2013

What is Inhibitor Family Camp? Hemophilia Inhibitor Family Camp was founded in 2010 by聽Comprehensive Health Education Services (CHES), and is made possible through an educational grant provided by Novo Nordisk. There are currently two programs held annually, both take place at camps that are part of the Serious Fun Network (formerly known as The Hole […]

FDA Approves FEIBA for Prophylactic Treatment to Treat Inhibitors

December 19, 2013

DEERFIELD, Ill., – Baxter International Inc. (NYSE:BAX) today announced that the United States Food and Drug Administration (FDA) granted approval of Baxter’s FEIBA [Anti-Inhibitor Coagulant Complex], the first and only FDA-approved treatment for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in patients with hemophilia A or B who have developed inhibitors. […]

Must-Have Gifts

December 18, 2013

“Mom, can I have a Cool Tools Tow Truck?” This was the question Max asked me when he was 4 years old and Cool Tools were THE gift of the year. Like so many of us, I had good intentions, but work, bleeds, motherhood, more bleeds, and life kept me super busy. As Christmas approached […]

Gears for Good 2013 Video Recap

December 16, 2013

In September, 28 riders biked 156 miles and raised over $51,000 for the bleeding disorders community during our聽 annual charity bike ride. Check out this NEW video to meet the riders, hear what motivated them to do this, learn where all the funds raised went, and information about how you can get involved next year!聽 […]

Infusing Love: He’s Just a Normal Kid

December 11, 2013

Our family had an eventful October. Along with multiple bleeds, (an unexplained forearm bleed and a couple of recurring ankle bleeds) we experienced our first ER visit for stitches. During a typical Friday afternoon. I was at work when I answered the phone to hear the voice of our wonderful school Health Aide — not […]

My Life, Our Future Launches Redesigned Website

December 10, 2013

It’s been an exciting year for My Life, Our Future, a nationwide initiative spearheaded by the National Hemophilia Foundation (NHF), offering a free genotyping test to people with hemophilia A and B. Now we’re pleased to announce the launch of the program’s newly redesigned website! As more and more hemophilia treatment centers (HTCs) across the […]

Dear Addy: Pre-Existing Condition Insurance Plan

December 9, 2013

Dear Addy, I have a young child with substantial medical costs. For the past couple of years I have spent 20-40% of my income on medical bills. Unfortunately my income is “too high” for Medicaid. I live in Texas and I currently have PCIP (pre-existing condition insurance plan) insurance which ends this month. What do […]

New Phase 3 Data Confirms Long-Lasting Characteristics of ALPROLIX鈩 and ELOCTATE鈩

December 9, 2013

CAMBRIDGE, Mass. & Stockholm –Today Biogen Idec (NASDAQ:BIIB) and Swedish Orphan Biovitrum AB (publ) (Sobi) (STO:SOBI) announced new results from Phase 3 studies of their investigational long-lasting recombinant factor IX and VIII Fc fusion protein candidates for hemophilia B and A, ALPROLIXTM and ELOCTATETM, including an interim analysis of pediatric pharmacokinetics (PK) data. These interim […]

Monitoring Anxiety

December 4, 2013

I have struggled with anxiety for as long as I can remember.聽 It took me years before I realized what it was and that it was real.聽 My mother also lived with it, but our family did not realize it until after she passed away.聽 It is a condition that can be handled in many […]

Keeping Their Memory Alive: World AIDS Day

December 1, 2013

Had I been the Matthew my mother was expecting to give birth to, my life would have been astronomically different. I was born right around the time the first factor concentrates to treat hemophilia were available for home use. Had I been born a male rather than a female, I probably would have been diagnosed […]

Changes in Latitude of My Attitude & Gratitude

November 27, 2013

I think Thanksgiving gets more hype than it should. It starts at an early age 鈥 we encourage preschoolers to make construction paper turkeys from their hands and write what they are thankful for on the 鈥渇eathers.鈥 Elementary and middle school students express their gratitude in the form of coat or canned food drives at […]

My Bags Are Packed

November 20, 2013

I鈥檝e been traveling more this past year than ever before.聽 It鈥檚 both a blessing and a curse each time I leave for a trip on my own without the rest of the family.聽 The anticipation of having some solitude and quiet time is fantastic. On the flip side, I鈥檓 a typical control-freak of a hemo […]

High-Cost ‘Specialty Tier’ Prescription Drugs Under Scrutiny in PA

November 19, 2013

If you have hemophilia, multiple sclerosis or any number of other hard-to-treat diseases, the cost of your medications alone could reach into six figures, depending on your insurance coverage. 鈥淚t鈥檚 roughly $15,000 a month, and from that I鈥檓 lucky to have good insurance so we have good co-pay structure, co-insurance,” said Nick Vizzoca, whose 13-year-old […]

A 504 Plan Can Help Protect Your Child

November 19, 2013

I’m just like any other father when it’s time for my children to go back to school鈥攕o excited! All kidding aside, transitioning back to school can be difficult for everyone if you’re not prepared. When it comes to the extra challenges our kids with bleeding disorders face, the added stress can become an even larger […]

25th Anniversary of World AIDS Day

November 18, 2013

On December 1st, hundreds of thousands of people in our nation and around the world observe World AIDS Day to raise awareness about HIV and AIDS. World Aids Day was established in 1988 by the World Health Organization (WHO) to ensure renewed and continual attention to the threat posed by HIV and AIDS. The Center […]

Drowning Out the Noise of the Helicopter

November 13, 2013

Maybe I have become more sensitive. Maybe it would be better to say that I have become more aware. But I have noticed that people love to throw around the phrase 鈥渉elicopter parenting.鈥 I have seen it in parenting magazines, blogs, and even in a recent publication from our health insurance company. They all point […]


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