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Fatherhood & Hemophilia

June 18, 2017

Being a father has been the most challenging and most rewarding task God has ever asked of me. I would do it all over again in a heartbeat. I have found the relationship between my daughter, Bethany, and me to be such paradox at times, but now that we’re both adults, I can’t express how […]

Volunteer Spotlight: Blood Brothers & Tireless Advocates

April 25, 2017

The bleeding disorders community has been built on the tireless advocacy work of volunteers. Today, we recognize two gentlemen and Blood Brothers who were mentors, friends, and inspiring advocates. We were honored to recognize Ellis Sulser and John Reed during our recent Symposium. The Ron Niederman Humanitarian Award recognizes extraordinary and inspirational service to the […]

My Journey with Pain

May 19, 2015

Pain is a very personal experience. Everyone has their own definitions, feelings, and memories associated with pain. Some pain is greater than others. Some pain paralyzes you, and some pain motivates you. How someone chooses to define and cope with pain is molded by his/her experiences throughout a lifetime. Below is a story of one […]

Infusing Love: On The Edge

July 9, 2014

Two boys who live on opposite sides of the International Date Line met this past May and it was magical. The two boys, ages 10 and 14, both share a love of Legos, tormenting their siblings, and guzzling root beer. Both boys also have severe Hemophilia A, as well as a long history of high […]

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, […]

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 […]

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, […]

HIV-Infected Men and Heart Disease

April 4, 2014

Many individuals with hemophilia are living longer, healthier lives due in large part to advances in treatment, access to treatment and knowledge of self care strategies.  Because they are living longer, it is so important for people with hemophilia and other bleeding disorders to make healthy lifestyle choices especially related to diet and exercise.  A nutritious diet and some form of  […]

Early 1990’s: Living with Hemophilia

March 19, 2014

The early 1990’s marked a period of action in the hemophilia community. In 1990, Ryan White died at the age of 18 and in 1992, Ricky Ray, one of three brothers infected with HIV/AIDS died at the age of 15. During this time, the hemophilia patient community began to independently ask their own questions and […]

Right Here, Right Now

February 26, 2014

ad·vo·ca·cy noun \ˈad-və-kə-sē : the act or process of supporting a cause or proposal : the act or process of advocating something The bleeding disorder community has been going to Washington for decades. When we started losing members from the tainted blood products some justifiably angry affected men, women and families decided it was time […]

A Situation, Mark Antell

July 30, 2011

Just a few decades ago, hemophilia did not just mean you had a bleeding disorder. It also meant that you were at high risk of being infected with blood-borne illnesses. Mark Antell knows this well. He received Hepatitis C through a blood transfusion sometime in the 60s or 70s. And the AIDS crisis of the […]

A Hopeful Future

July 12, 2011

Ryan and EJ share their experiences growing up with hemophilia. The future of our community is hopeful with the advancements in care and support from others who understand!

Terry Lamb

July 2, 2011

Terry talks about growing up with hemophilia and how staying active has helped him live a wonderful life!

Roger the Cactus Farmer

June 11, 2010

Roger, a 67 year old with hemophilia is full of wisdom and life experiences.

Barry, A True Blood Brother

December 1, 2009

Barry has hemophilia, HIV, and hepatitis C.  He discusses the realities of being diagnosed HIV positive as a teenager and the many challenges he has faced throughout his life.  Barry hopes by sharing his story he will empower others to share theirs.

Alex & Jim

October 6, 2009

Jim and Alex are two young men with hemophilia.  They talk about the positive impact of camp and the importance of advocating for the bleeding disorders community and themselves.


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