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Betty Jane Henry

Fred Ferguson, remembers his sister, NHF Founder Betty Jane Henry… and Betty Jane remembers NHF.
Betty Jane Henry

When Lee, Betty Jane's son died in 1963, she was heartbroken. Lee was in college at Chapel Hill, North Carolina. He went to school there to be close to a specialist in case he had problems, but it wasn't enough.

Betty Jane and her husband [Robert Lee Henry] left NHF not long after Lee died. The Foundation was a constant reminder of Lee - but they never forgot NHF. When Betty Jane passed in 2010 she left a meaningful gift to NHF in her will. NHF was always important to her.

Lee's hemophilia hit Betty Jane hard. While she never had other children, I think that the thousands of people she and Robert touched with the founding of the National Hemophilia Foundation can just as easily be called "Betty Jane's children." She was a determined woman. She learned that from her other great love: horses.

Betty Jane began riding three-gaited saddle horses at age 13. Believe it or not, she learned from refugee Cossacks! They fled Russia because of Stalin. By the time she was 19, Betty Jane was the youngest judge of the National Horse Show. Later she helped move the show to Palm Beach Florida. It was a life-long passion.

Betty Jane's riding experience showed her what determination could do. She discovered that Lee had hemophilia when he was two. There was no such thing as clotting factor. Within one month early in Lee's life, he went through 99 transfusions. That's when Betty Jane and Robert founded NHF.

Betty Jane wasn't shy. She asked everyone to help her work with hemophilia. I was even enlisted after I finished with the Army as a writer for Stars & Stripes. Back then it was tough to get anyone's attention about hemophilia. None of the newspaper's medical writers would touch the story. There was no science to point to.

By the time Betty Jane left her work at NHF, it was 20 years. It was making a major difference in the lives of people with hemophilia — and people were paying attention.

I remember that Betty Jane's last appearance for the foundation was in 2001, at the 50th anniversary meeting in Orlando. She really didn't want to talk. I had to convince her to come, but she gave a great speech.

As hard as it was for Betty Jane to recall her days with the foundation, she always knew that supporting NHF — even after her passing — was essential for the lives of people with hemophilia. I'm pretty sure the bequest was always in her will. I know that NHF was always her heart.