Dr. Jeanne Lusher

Dr. Jeanne Lusher never saw anything like it before. The bruises were certainly from some sort of trauma, and yet they were so alarming that all sorts of questions came to mind. What could cause this in an 18 month old girl?

Dr. Lusher was early in her tenure as a resident at New Orleans's Charity Hospital, a massive 3000 bed medical center with a tradition of caring for the poor. It was 1961. She was new to the Emergency Room. "We saw everything from snake bites to polio," she remembers. "We were always on call, but I'll never forget that day."

It was the kind of day that would impact Jeanne for a lifetime, and in turn, cause Jeanne to impact thousands, maybe millions, throughout her career.

"Soon enough we found out that the little girl had a rare instance of female hemophilia," according to Dr. Lusher. "I didn't know anything about the disease at the time, knew very little about blood coagulation, and, I wanted to learn more." The girl's family didn't know anything about hemophilia either. Nobody remembered any history of hemophilia in their families.

The daughter of an American father and a French Canadian mother, Jeanne Lusher did something that was all-too-rare for a young woman of the day. She not only went to college, but earned a medical degree. Both were from the University of Cincinnati. From there, she was off to Charity for her residency in Pediatrics.

It wasn't too long after she met the bruised little girl, that Dr. Lusher's skills were recognized with her advancement to Charity's Chief Resident of Pediatrics. "We had a lot of kids with cancer," Dr. Lusher remembers. "I felt responsible for them all." So when a faculty member - their expert in hematology and oncology - left the hospital for another job, the Chairman of Pediatrics asked her to go to Detroit to study Hematology/Oncology at the Children's Hospital of Michigan, with the idea that she would eventually take her colleague's place.

From Detroit she went to Washington University in St. Louis for more experience and education. It was in St. Louis, with that bruised little girl still on her mind, that Dr. Lusher started digging deeper into the science of blood clotting. She never went back to New Orleans. Dr. Lusher returned to Michigan for the rest of her career.

It's hard to overstate Dr. Lusher's impact on hemophilia and the blood disorder community. In fact, she even has a Wikipedia page that outlines her many accomplishments ("One of my students put it up," she says with some embarrassment, "he insisted on it.") It's clear that she's admired for her medical achievements, but just spending a few minutes talking with her, and you can see how people admire her personally, too. That's what has driven the dedication of her many, many students, and her contributions to the National Hemophilia Foundation.

"I first got involved with the Hemophilia Foundation of Michigan," she recalls. "I was on the board, and then served as chairman."

It was the start of lifetime commitment to NHF and its chapters. Over time, Dr. Lusher has served as NHF's Associate Medical Director, then Medical Director during the AIDS crisis, and the AIDS task force. She helped redesign the Medical and Scientific Advisory Council (MASAC) and became a member in 1990. Dr. Lusher went on to chair the group for 7 years, until 2001. Along the way she's also been part of the Women with Bleeding Disorders Committee, served on NHF's national board of directors, and of course, attended many NHF national conferences. "I vividly remember when Alan Brownstein was NHF's Executive Director," she recalls with a smile, "He was a very dynamic and dedicated person who would often hold late evening calls that would go on for hours. We'd talk about some very important medical issues. Some nights we didn't end until 1 AM or later!"

While the work has almost always been a pleasure ("I'm very impressed with the people on staff and the volunteers," she says. "All wonderful people"), all of her work with NHF and NHF chapters is for one purpose: helping her patients. "It's been so helpful to work on common problems with colleagues," Dr. Lusher says. "Looking for evidence based treatments. Discussing unsolved issues and what was the 'state of the art.' Reviewing international studies. Making recommendations. It was always helpful to interact with colleagues who could discuss complicated patient problems. We put out articles and developed programs for blood safety and other hemophilia related issues. The work we did was terrifically rewarding!"

It's because she sees so much more to do to address bleeding disorders that Dr. Lusher has left NHF in her will. "My whole experience with NHF has been positive," she tells us. "The organization and people are great. And there are new things all the time that need addressing. In 1980 who would have imagined the disaster caused by AIDS? Now, thank goodness, we have synthetic clotting factors , both VIII and IX. Who knows what's next? NHF has advocated for insurance coverage, and they've been there to educate families new to bleeding disorders. Then there's the research. It's a really worthy cause."

Yet without Dr. Jeanne Lusher and her encounter with a small, badly bruised child, who knows how much more there would be to do? It's hard to tell who made more impact on whom - NHF or Dr. Lusher? But it's clear that both made, and will continue to make a difference in the lives of the girls and boys, and men and women with hemophilia.

My life at the National Hemophilia has been rewarding. I earned my undergraduate degree in Psychology in 1988, served on the Alumni Executive Board as Vice President, my daughter joined me as part the the National Hemophilia Foundation alumni in 2000 and I was awarded the outstanding alumni award in 2007. But the most rewarding part of my relationship was naming the National Hemophilia Foundation in my will. By naming the National Hemophilia a beneficiary of my will, I am able to provide now for a future gift to the National Hemophilia Foundation.

Betty Jane Henry

Fred Ferguson, remembers his sister, NHF Founder 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.

Dr. Jeanne Lusher recently passed.

James Deering

Jimmy knew a good investment when he saw it... in Gabe, and NHF.

(As told by Jim's sister, Lana Wilson, Gabe's aunt.)

Jimmy believed in investment. He just loved Warren Buffet. If Warren Buffet ok'ed it, Jimmy would do it. And like Buffet, Jimmy was in his investments for the long term. When Jimmy found a good thing, he stuck with it... just like he did with his bequest to the National Hemophilia Foundation.

Jimmy was my brother and the oldest child in our family of 13 children. He was born in Indiana in the thick of the Great Depression. Being the oldest meant responsibility - and with it, working in the family business: dry cleaning. It was tough, hot work. It gave him a great work ethic. But by the 1950's it was time to strike out on his own. He joined the US Navy.

I'll never forget, when Jimmy came home on leave, he'd bring presents for everyone. He was such a giving person.

It was really too bad that Jimmy outlived his own children. That may be why he took a special interest in our nephew, Gabe. Jimmy thought that hemophilia was scary and wanted to help in any way he could. We are so grateful.

Jimmy had a knack for business and knew how to earn money. It all started when he left the Navy. He opened his own dry cleaning business, and then went into real estate.

Having the businesses let him do all sorts of things - including leaving NHF in his will. Jimmy saw it as an example to Gabe. He took a real interest in Gabe's progress. Jimmy constantly told Gabe and others that he wanted to do something to help end hemophilia. Jimmy was a man of his word - he put his money where it was important to him - right to the end.

Like all of us, Jimmy was amazed that hemophilia treatment had come so far. He was impressed with how Gabe handled his condition. At only 10 years old, Gabe is active and self infuses. His hemophilia hardly slows him down - or keeps him out of a group. Gabe's a competitive swimmer.

When he gets a joint bleed, there's no problem heading to the local Hemophilia Treatment Center. He knows that's what he needs to do. We are all so proud of him.

When Jimmy passed away, he remembered NHF in his will. His gift was made in honor of Gabe. He wanted to teach Gabe how important giving was to him, and how it could be to Gabe.

Jimmy knew a good investment when he saw it... in Gabe, and NHF.

Mary Macdonald with husband, Sam

Nobody believed that I had hemophilia! I give to NHF regularly and have it in my will because of how its work relieves the suffering of thousands. Before Factor VIII became available, hemophilia was a severely painful, crippling condition. In my opinion, no one should have to suffer such pain. You lived with the fear of bleeding every day.

You see, when I was born in 1926, hemophilia was considered a condition occurring in the royal families of Europe. Only males were born with the condition, therefore (so the wisdom went) I couldn't possibly have hemophilia! But when I look back, it's clear that something was wrong. The first major episode that I remember was when I was 10 years old. Our local dentist extracted a decayed molar. The bleeding didn't stop for over week. After that, nothing symptomatic occurred until I started my periods. They were very difficult to live with - lasting at least seven days. After graduating high school, I entered the three-year nursing program at a local hospital. In those days, it wasn't necessary to sign permission for surgery. Our local surgeon decided I needed tonsillectomy - and thus it was performed. I hemorrhaged profusely for a week. Then I was readmitted for more surgery. My hemoglobin was unreadable and I was so weak that it was difficult to walk without assistance. Nevertheless, my bleeding was finally controlled, and I entered the nursing program, and graduated in 1946.

In 1951 my husband and I were blessed with a baby girl. After delivery I bled terribly for several weeks. Our son was born two years later. I bled tremendously again, but to make matters worse, so did my son! Finally, my pediatrician referred us to University of Maryland Hospital. Dr. Sacks diagnosed my son with severe hemophilia. I always had so much guilt. I blamed myself for causing so much pain to a child I loved more than life.

Our life changed completely when Factor VIII became available. Research money made places like the Georgetown University Hemophilia Treatment Center in Washington, DC available to us. It's a blessing. Dr. Craig Kessler, its director, and Nurse Carolyn Francis, its program coordinator, give wonderful care and much-needed service to the hemophilia community. Arrangements were made for me to have genetic testing at the clinic. I learned that I too have hemophilia (Factor VIII). A few years later, I needed my gall bladder removed. Carolyn made the arrangements. I received Factor VIII - no bleeding, no problems.

I'm now 86 years old, my son is 60. We made it! I consider this a miracle. We are so thankful. I know that my gifts now and my bequest later will stop others from suffering, too.