Donate

Fit Factor: This Summer, Keep Fit With The Fam!

June 5, 2017

With Father’s Day around the corner, now is the time to start thinking up fun, active ways to spend time with your dad. This year, add a new activity to do to make Father’s Day special, like climbing a mountain or going bird watching. Being physically active with your dad (and your family in general), […]

Infusing Love: Life Imitates Art

May 3, 2017

When ABC premiered, “Speechless” last fall, I wasn’t 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’m happy to say it’s readily become one of a handful of shows we watch […]

Infusing Love: This Is Us

March 22, 2017

  My mighty warrior, Caeleb, still has an inhibitor. His Bethesda Unit (BU) is less than one and his half-life is less than four hours, so we have a ways to go. His BU has reached zero a few times, and I was thrilled! It was a victory, and when you live with an inhibitor […]

Infusing Love: We Are Family

March 1, 2017

  Since my son Thomas was born thirteen years ago, I’ve come to think of the bleeding disorders community as family. Relatively speaking, that feeling came to us very quickly after meeting people in the community. My husband and I jumped right into attending events, volunteering, and generally asking questions of medical providers and anyone […]

Infusing Love: Single But Not Alone

January 11, 2017

Being a single parent is challenging for anyone. Being the single parent of a child with a severe, costly chronic illness comes with its own set of issues. I remember the times that Max unable to attend events that were geared toward fathers and sons. I once called our chapter office when Max was around […]

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’t 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 […]

Dear Addy: National Safety Month

June 13, 2016

Dear Addy, My son is about to start summer vacation. While he is excited, I’m concerned about all of the activities he will be doing. It seems everything he enjoys involves risking a bleed. How do I monitor my child’s safety while allowing him to have fun this summer? Signed, Anxious About Summer Break Dear […]

Infusing Love: A Letter to Hemophilia

January 27, 2016

Dear Hemophilia, There was a time when you devastated me. You destroyed my little boy’s knee and ankle, causing tremendous pain and forcing him to undergo several port surgeries. He missed weeks of school. Oh, and let’s not forget the wheelchair you put him in for over a year. That was torture, taking away his […]

How a Second Grader with Hemophilia Copes with Pain

June 9, 2015

Kelly and Brian of Oregon never expected their son, Bubba, to have severe hemophilia A, and they certainly never expected Bubba to experience the complications of an inhibitor and chronic pain in his childhood. Kelly shared her family’s experiences with HFA with hopes that other families can learn from their experiences. How did you find […]

Deciding to Chase the Dream

November 19, 2014

It is important for individuals with a bleeding disorder to find a form of physical activity that they enjoy. When muscles are used during exercise it helps to  keep them flexible and strong.  Physical activity also helps individuals to maintain a healthy weight which keeps less stress off the joints, and has even proven to […]

Infusing Love: It’s a Family Affair

October 1, 2014

I grew up knowing the word hemophilia, although as a child, I could not have told you what it exactly meant. I knew that some of the boys in my family bled a lot, but nothing about the different severities or types.  I knew that my Granddaddy was a bleeder and that he died when […]

Boston Globe: Help For Patients with Chronic Diseases

July 24, 2014

Receiving a diagnosis for a chronic disease whether for yourself or your child can be devastating and confusing. When my son was diagnosed with hemophilia, he was just days old. I often think back to those first days and distinctly remember a conversation with a nurse, who would go on to become a long-term caregiver […]

Boston Globe: Specialty Drugs Transform Lives — But At a Cost

July 21, 2014

Every year, Cora Higson fills out a sheaf of forms and waits several long, anxious days to learn whether a charity will pay for the drug she needs to breathe. The medication — Tracleer — is so essential, Higson says, that she is supposed to call her doctor immediately if she misses a dose. But […]

Penn Research Could Improve Hemophilia Treatment

July 17, 2014

*This article was originally posted on July 17, 2014 in Penn Current and was written by Katherine Unger Baillie. Click here to read this article in its entirety. ____________________________________ Hemophilia is a rare but potentially dangerous disease. People with the condition produce very low levels of clotting factor, the proteins in blood that stop bleeding and help begin the […]

Sisters By Chance, Friends By Choice

July 17, 2014

A carrier of the hemophilia gene is a female who has a genetic mutation on one of her X chromosomes. About 1/3 of carriers experience bleeding problems and are often referred to as symptomatic carriers. By definition, if a woman has clotting factor levels less than 50%, she has mild hemophilia. Ashley and Sarah are […]

HFA ‘Champion Award’ Given to 4 Members of Congress

June 19, 2014

On June 18, 2014, we hosted a successful Hill Day in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 460, The Patients’ Access to Treatment Act in the US Senate, and other issues like the ability for third-party non-profits to help make payments on behalf of patients, and funding for the Centers for […]

Infusing Love: Knocking On Capitol Hill’s Doors

June 19, 2014

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.  Advocacy sounded like downright torture and I didn’t want any part of it. A perspective change came in the late fall of 2005. My husband called […]

Laughing Away the Pain

May 23, 2014

I was diagnosed with severe Hemophilia A at birth in New Jersey. During my childhood, I moved around often with my family. Needless to say, these experiences have taught me how to adapt. I have been treated at several different hemophilia treatment centers, and every time I changed my center, I had to learn a […]

How a Liver Transplant Changed My Life

April 25, 2014

One of the most important things you can do for your health is to have a proper diet. What you put into your body affects how you look and feel. Maintaining a healthy weight is especially important for individuals with a bleeding disorder. Being at a healthy weight can reduce the number of bleeding episodes you experience, […]

Infusing Love: I’m Not Bossy. I’m a Hemo Mom

April 23, 2014

You may have seen the new campaign, “Ban Bossy” that features Beyonce, Michelle Obama, Sheryl Sanberg and other prominent female figures. This campaign is focused on encouraging girls to be confident leaders, while discouraging labels such as bossy, aggressive, angry, or one of the many other commonly used epithets. I think we as Hemo Moms […]

AFFIRM: The Next Generation of Hemophilia Leaders

April 22, 2014

AFFIRM (Adult Fellowship for Integrating Responsible Mentors) is a three- year leadership development program targeting men ages 25 to 35 from around the world . In its second term, ten men have demonstrated dedication and leadership within their local community to improve the lives of those with a bleeding disorder (see list below). Twice a […]

Positive Life: Barry Haarde Road Tripping Again

April 20, 2014

(Positive Life): Bob Leahy: Barry. You’re off on another trip. Tell us about this one. Barry Haarde: This year’s ride is the shortest but fastest ride of the three and departs from L.A. on Easter Sunday and rolls all the way to Savannah, GA, which amounts to about 2,900 miles over a period of 27 days, […]

FDA: Hemophilia Treatments Have Come a Long Way

April 18, 2014

Gone are the days when a hemophilia diagnosis meant you could not live a normal life. Now more hemophilia treatments are approved by the Food and Drug Administration (FDA), and people with the condition can better manage bleeding. That’s good news as thousands observe World Hemophilia Day on April 17, 2014. Hemophilia is a rare bleeding […]

Thousands of Families Observe World Hemophilia Day

April 17, 2014

Today (April 17th),  tens of thousands of families across our nation and around the world will recognize World Hemophilia Day to raise awareness of bleeding disorders. “World Hemophilia Day brings public awareness about bleeding disorders and encourages the development of improved treatment,” said Kimberly Haugstad, Executive Director of Hemophilia Federation of America (HFA). “Worldwide, 1 in 1,000 […]

Infusing Love: The Union Behind My Reunion

April 16, 2014

The thing about kids is that they grow up  they move on and make their own choices. That’s what Max did – he moved on and made his own choices. That’s not to say he has always made GOOD choices. But what would the point of all the years of teaching him to be independent […]

The Benefits of Martial Arts

April 11, 2014

When considering a physical activity for themselves or their family members with a bleeding disorder, many people overlook the possibility of martial arts. Martial arts can be defined as any of the traditional forms of Oriental self-defense or combat that utilize physical skill and coordination without weapons, such as karate, aikido, judo, or Kung Fu, […]

Infusing Love: Hug O’ War

April 9, 2014

I grew up an only child raised by my grandparents, so I never had the sibling experience of arguing and fighting with another child in the house.  As a mom, that battle between siblings and the idea of sibling rivalry has been a foreign concept to me.  Sure, there were periods of my life when […]

A Carrier Seen Through Her Father’s Eyes

April 9, 2014

Having hemophilia is an interesting challenge for an individual. Throughout my life, I have tried to learn as much as I could about this condition and find a way to overcome the adversities it often presents. I thought I had this thing down to a science, but I had no idea what to expect as […]

Infusing Love: Pass to Play

April 2, 2014

Thomas recently had a project at school that required group work over a few weekends.  Another mom in the group offered to host the boys (for which I was grateful – I didn’t particularly want a group of five 5th grade boys in my house for several hours over the weekend.) At the time, Thomas […]

Infusing Love: It’s All About the People

March 26, 2014

In 2008 my husband, two kiddos and I traveled to our first Hemophilia Federation of America (HFA) annual Symposium.  We had been to a couple of NHF meetings since the kids had been born but we did not know much about HFA.  Kim Bernstein, a truly talented community advocate, had been pushing me that I […]


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.