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Infusing Love: The Best Job You鈥檒l Never Get (Monetary) Payment For

May 12, 2013

Oprah Winfrey has been quoted, 鈥淚 always say moms have the toughest job in the world.鈥澛 Everybody knows Oprah is right more often than not. What would the job description for a mom with a child of a bleeding disorder look like?聽 I think maybe it would be something along these lines: Job Title: Mama […]

Poorly Understood: Women and Bleeding Disorders

May 9, 2013

While bleeding disorders like hemophilia and von Willebrand Disease (vWD) affect men and women, these conditions present unique issues for women because of heavy or abnormal bleeding during menstrual cycles and after childbirth. Many areas crucial to the diagnosis and treatment of bleeding disorders in girls and women are poorly understood. According to the CDC, […]

Symposium 2013 Gets Kids Cooking Healthy

May 9, 2013

HFA鈥檚 Symposium provides an opportunity for children with bleeding disorders and their siblings to come together for fun and play.聽 There is also opportunity for the FitFactor team to provide education and fun regarding healthy eating and physical activity.聽 At this year鈥檚 Symposium each family of a 5-12 year old was given a complimentary copy […]

Honoring All Moms, Past & Present

May 8, 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 […]

I. Am. Exhausted. (…and Doing the Best I Can)

May 1, 2013

It’s one o’clock in the morning and I just finished infusing Thomas for the seventh time in twenty-eight hours. We spent four of those hours in the emergency room for pain management and I’ve heard, “Mommy!” approximately 635 times today. 聽I. Am. Exhausted. I had to keep Thomas home from school due to a nasty […]

CSL Behring Receives FDA Approval of Kcentra鈩

April 30, 2013

King of Prussia, PA 鈥 CSL Behring announced today that the U.S. Food and Drug Administration (FDA) approved Kcentra鈩 (Prothrombin Complex Concentrate [Human]), the first non-activated 4-factor prothrombin complex concentrate (PCC) for the urgent reversal of acquired coagulation factor deficiency induced by vitamin K antagonist (e.g., warfarin) therapy in adult patients with acute major bleeding. […]

It’s Time for a Family Reunion

April 24, 2013

One of the things that surprised me most about joining the bleeding disorders community was the sense of family.聽 Thomas鈥檚 diagnosis was the first in our family history (although we鈥檇 later find out I鈥檓 a carrier), so the shock of hemophilia was hard to shake, but the open arms we met made it a bit […]

Medicaid Expansion in Your State

April 18, 2013

聽 The Medicaid program is a federal and state partnership to provide health insurance for those who are financially and medically needy. It is a vital safety net in our health care system. Federal law sets a baseline of eligibility categories for states to follow, but states have the flexibility to cover above that baseline […]

A World Away; But That鈥檚 Not So Far

April 17, 2013

My fellow hemo moms are like my sisters. They are the women I can call, text, or email when I need an outlet for my fears and frustrations.聽 There seems to be an instant sisterhood amongst hemo moms as soon as you connect a group of them – whether that connection takes place in person […]

Cookie Theft Leads to Laughter

April 9, 2013

Most moms of children with bleeding disorders have a sick and twisted sense of humor. Many of us use humor as a coping mechanism. Honestly, I don’t know how I could have managed all these years without many moments of聽 levity and giggles. For instance, one of the scariest potential bleeds Thomas ever had is […]

Normal is Boring

April 3, 2013

A few months ago, Thomas was just getting over a foot bleed, ironically caused from snow boots that were too tight. (I mean, really? 聽Snow boots?) After a week of not being able to do his nightly chore of taking out the kitchen trash, I declared his foot healed enough to take out the garbage. […]

Raising Awareness while Raising Children

March 31, 2013

I can鈥檛 say that I was 鈥渁ware鈥 of hemophilia before Thomas was born. Since there was no family history, the only thing I could vaguely recall about hemophilia was that Ryan White had it. My knowledge beyond that was slim to none. In the days right after the diagnosis, I didn鈥檛 want to look at […]

Proud Mom of an Alphabet Belcher

March 27, 2013

From the time Thomas was an infant, I had been told hemophilia camp was not to be missed.聽 Kids and adults alike told me how wonderful camp was for them and how it was their most anticipated week of the year.聽 There are over eighty summer or family camps for persons with bleeding disorders in […]

Siblings: Unaffected, but certainly AFFECTED

March 13, 2013

  As a mom, the single hardest thing for me about hemophilia hasn’t been the unpredictability, or the pain, or the insurance, or the infusions. 聽The thing I struggle with and lose the most sleep over are my “unaffected” girls. I’ve got this hemophilia thing down – recognize the bleed, treat it. Rinse, repeat. 聽But […]

That Almost Never Happens

March 6, 2013

                At the very first meeting we had at the Hemophilia Treatment Center (HTC) when Thomas was a week old, Nathan asked the HTC team, “Does the medicine ever stop working? Can you build up antibodies to it?” Not wanting to worry us and having a good track […]

HFA Honors February 28th As Rare Disease Day

February 28, 2013

        The Hemophilia Federation of America (HFA) will join the National Organization for Rare Disorders (NORD), and others around the world in observing Rare Disease Day on February 28, 2013. The purpose of this day is to focus attention on the needs of patients and families affected by rare diseases. In the […]

The Truth About Advocacy

February 27, 2013

              Advocacy used to scare the devil out of me. I avoided anything that had to do with going to my state capitol or writing a letter to a legislator.聽 Advocacy sounded like downright torture and I didn鈥檛 want any part of it. A perspective change came in the […]

Earning My Mommy Medical Degree

February 25, 2013

                  Moms need a safe place to land sometimes. With that in mind, HFA is launching a blog dedicated to all things mom!聽In this safe spot, moms of a child with a bleeding disorder will be able to read stories and draw inspiration from like-minded (and similarly […]

Welcome to Infusing Love: A Mom’s View

February 19, 2013

                Moms need a safe place to land sometimes. With that in mind, HFA is launching a blog dedicated to all things mom!聽In this safe spot, moms of a child with a bleeding disorder will be able to read stories and draw inspiration from like-minded (and similarly crazed) […]

Loving Kindness Meditation (Audio & Video)

February 18, 2013

There are many benefits of meditation. If you practice this guided meditation regularly it can help you stay positive towards yourself and others. It can also help to keep you calm in difficult situations and reduce irritation and anger. Kindness is an antidote for anger and irritation.

Preview of Mom’s Blog: The Power of Unconditional Love

February 14, 2013

                My mother and grandmother always warned me, but I never understood it until I experienced it first hand.聽聽I’m not even really sure it’s fair to say I felt it in the preceding nine months – (it was actually pretty hard to feel much of anything beyond all […]

Flexing Your Online Advocacy Muscle

February 6, 2013

In the early 1980s, when universities and the government were working together to expand the Advanced Research Projects Agency Network (ARPANet), an early version of the Internet, the Massachusetts Institute of Technology issued this warning to users: 鈥淪ending electronic mail over the ARPANet for . . . political purposes is both anti-social and illegal.聽 By […]

How to Win the Battle of the Bugs

February 4, 2013

For most of us, fall and winter means less time outdoors in the fresh air, and more time spent in close quarters with those that we work, play, learn, and live with. It is a great opportunity for cold and flu viruses to work their way from one person to the next.聽 While we all […]

A Stronger and Healthier Body Means Less Bleeding

January 31, 2013

  I have hemophilia. When I was a in school, my parents told me that I couldn鈥檛 play football, baseball, soccer, or other contact sports, because I was a 鈥渂leeder.鈥 I always wondered growing up, what does being a bleeder even mean? All I knew was that I bruised easily and wasn鈥檛 going to die […]

Families Throughout the U.S. Observe World AIDS DAY

November 30, 2012

Link to World AIDS Day Press Release聽 Washington, DC – Tomorrow, 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 […]

2012 Election Results Will Have Long-term Effect on the Bleeding Disorder Community

November 9, 2012

Link聽to PDF of聽HFA Reacts to 2012 Election Washington, D.C. – This week, President Obama was re-elected as the 44th President of the United States; in Congress the balance of power remained the same as pre -election: Democrats in control of the Senate and the House led by Republicans.聽 On the state level, elections were held […]

Press Release: HFA Reacts to Supreme Court Ruling on Affordable Care Act

June 28, 2012

HFA Reacts to Supreme Court Ruling on Affordable Care Act Ruling will have Long-term Effect on the Bleeding Disorder Community聽 FOR IMMEDIATE RELEASE: June 28, 2012 Contact: Richard Pezzillo (202)-675-6984聽r.pezzillo@hemophiliafed.org Link to PDF of HFA聽Reacts to Supreme Court Ruling聽 Washington, D.C. – In a 5-4 vote, the United States Supreme Court today released its much-anticipated […]

Community Mourns Loss of Hemophilia Advocate and Champion

May 30, 2012

The bleeding disorders community has lost a national champion and advocate, Terry Lamb. Terry passed away Monday afternoon, May 29, 2012, of a cerebral hemorrhage at the age of 61. Terry was born and resided in Lynchburg, VA. 聽At age three, he was diagnosed with severe hemophilia and fought hard to not let his condition […]

Community Mourns Loss of National Champion for Woman’s Bleeding Disorders

April 24, 2012

4-23-12 — Our community has lost a national champion for women’s bleeding disorders, Anna DeSimone. Anna, a resident of New Jersey and former board member of HFA, 聽was one of the first to help drive awareness, educate and help correctly diagnose, manage, and treat women with bleeding disorders. She will be deeply missed. Further information聽will […]

Press Release: Families Throughout the U.S. Celebrate World Hemophilia Day

April 17, 2012

Families Throughout the U.S. Celebrate World Hemophilia Day FOR IMMEDIATE RELEASE: April 12, 2012 Contact: Richard Pezzillo (202)-675-6984聽r.pezzillo@hemophiliafed.org Link to PDF of聽World Hemophilia Day聽 Washington, DC– Today, Tuesday, April 17, tens of thousands of families across our nation and around the world are celebrating World Hemophilia Day to raise awareness of bleeding disorders. “World Hemophilia […]


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