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A Florida Couple Honors Their Daughter's RequestBoynton Pair Safeguard Transplant Patients in Daughter's NameBy Kim Folstad - Palm Beach Post Staff Writer They did it for Amy. Because she asked. Because Martin and Florence Strelzer thought they'd witnessed a miracle when their daughter received a bone marrow transplant in February 1996 and returned home to Connecticut cured of the cancer that was killing her. But then she died anyway, just six weeks later, of pneumonia. She was 35, married and had two daughters of her own. More than 600 people came to her funeral. "When my daughter knew she was dying, she turned to us and said, 'I want you guys to do everything you can to help those who follow me,'" Martin recalls. That request, the Strelzers say, became the motivation behind an incredible family project: the Amy Strelzer Manasevit Scholars Program for the study of Post-Transplant Complications, a fund administered by The Marrow Foundation®, based in Washington, D.C. It's an elaborate name, but there's just one simple goal: More research. Together with The Marrow Foundation and its partner, the National Marrow Donor Program, the Strelzers have established a new way to get money to doctors hoping to help patients survive the many problems that arise after a bone marrow transplant. So far, they have raised more than $1.2 million. Recently, in recognition of the life-saving efforts of The Marrow Foundation and the National Marrow Donor Program, the Strelzers were given The Donnall and Dorothy E. Thomas Leadership for Life Award. The award - named for E. Donnall Thomas, who won the 1990 Nobel Prize in Medicine for his pioneering work on marrow transplantation - is impressive, a crystal pyramid atop a silver pedestal. The Strelzers keep it prominently displayed on a shelf in their Boynton Beach home. Still, it's difficult to keep from looking away to the left, to a portrait of Amy that hangs nearby. "My son-in-law says that Amy was the kind of person who lit up a room," Martin says. "You know the expression 'work a room'? She did it without even trying. She was the perfect child, the perfect mother, the perfect wife." Amy was 32 when she was diagnosed with multiple myeloma, an incurable blood cancer that cripples the body's immune system. "There really was no hope," Martin says. But Amy's husband, Bruce Manasevit, and Florence went all over the country looking for some anyway. They ended up at the University of Arkansas in Little Rock, where Amy's doctors said a bone marrow transplant was her best chance.
Complications are manyIt sounds simple enough, the Strelzers say, to find a donor from a Registry with more than 4 million names; to get the transplant, as hundreds of patients do every month; and to live happily ever after. They got a better idea of what would be involved when the hospital handed Amy a 15-page packet listing all the possible problems related to the procedure."It scares you to death," Florence says. But Amy decided to proceed. It took nine months just for her to get well enough for a transplant. And as it turned out, the search for a donor wasn't easy at all. A sibling or other relative usually makes the best match, but Amy and her brother, Stuart, were both adopted. When Martin called the adoption agency in New York to get information on Amy's birth parents, he was told her records were sealed. They had to go to court to get the record released. It turned out Amy had an older brother who had been looking for her. He waned to donate his bone marrow, but when he was tested, the results were disappointing - only a four-point match out of an optimum six. "It was really an unbelievable thing," Florence says. It got even more complicated as time went on. The next best choice after a family member is a donor of the same race or ethnic group, so they knew Amy would need a Jewish donor. But when a "perfect" match was finally found, the man was an orthodox Jew whose rabbi was against the idea of taking the young man's marrow and putting it in somebody else's body. "After we heard that, we were absolutely destroyed," Martin recalls. "We used every contact we had. Finally, somebody got to him and his rabbi and said, 'You must do this. This young lady's life depends on it'". Amy got her transplant.
She never regained strengthAnd although she was still in "a bad state," weakened by chemotherapy and radiation treatments, the transplant was considered a success. "She was cured. It was a miracle," Florence says. "She finally was feeling better."Amy went home to Connecticut, and so did Martin and Florence. They already had moved from New York to help care for their daughter and ease her back into a normal life. But life did not go back to normal. Amy wasn't strong enough even to lift her daughters, Lauren, who was 7 then, and Margot, who was 5. And she was too weak to go back to her public relations job or do the volunteer work she had enjoyed before she became ill. Within weeks, she developed a virulent pneumonia and returned to the hospital. When she died, Martin says, all the suffering his daughter had endured seemed a terrible waste. "The doctor was there, and I said, 'Why? Why did you put Amy through nine months of hell and you knew this probably wasn't going to work?'" The Strelzers learned that it isn't at all uncommon for transplant patients to succumb to post-transplant infections and illnesses. And little was being done to change that. "There's only so much money, research time and staff," Martin says. "In discussion (with The Marrow Foundation), it came out that no one was doing anything about post-transplant complications." The Strelzers received about $8,000 in donations after Amy's funeral, and they met with The Marrow Foundation to find out what would be the best way to spend it. They were told that if they could raise $1.5 million in the next two years, a significant research program could be established, and the foundation would support it. Because he wanted to be there for Amy and Florence during his daughter's illness, Martin had retired early as the North American director of The World Union for Progressive Judaism. But he still had his fund-raising contacts - including the Jacob and Hilda Blaustein Foundation, which gave an initial gift of $150,000. Amy's brother, Stuart works for ABC television, and he also used his contacts to raise money and to bring attention to the project. "Within weeks, we had raised a half million dollars," Martin says. "Without those contacts, it's impossible." Most money-raising drives pick up donations of $5, $10 or $25, he adds. "You're not going to raise a million and a half that way. As much as we appreciated it - that's where the initial $8,000 came from - that's not going to do it." The Marrow Foundation, duly impressed, devoted staff time to developing the fund. And again, the Strelzers and Bruce Manasevit sat down with The Marrow Foundation and put together a search committee to find research scientists who could put the money to good use. The Amy Strelzer Manasevit Scholars Program will finance six scholars over a four-year period. Each recipient is given $120,000 per year for two years. The 1998-2000 Scholars have completed their term; the 1999-2001 Scholars are in the middle of theirs; and the 2000-2002 Scholars were just announced. Two fellowships also have been set up through the program.
Progress encourages effortThe Scholars - working out of universities and cancer research centers across the country - are focusing on complications from infections, graft failure, immune system regeneration and graft versus host-disease."How do you get these people? You get them by giving a grant that is so enticing, they can't turn it down," Martin says. The Strelzers already are hearing that the physicians given the time and money they need,are making important discoveries. At a recent meeting of The Marrow Foundation board, Florence says, she was struck by the way her daughter's name loomed so large on the projection screen. "When we see her name, we're keeping her alive," she says. It'll get harder to continue raising money, of course. They can't keep going back to the same people, many of whom are friends, for help. And they are tired from the pace, Martin says. "But that 45-minute report at the board meeting brought us to such a pitch that we said, 'How can we stop?'" When the doctors spoke about their research - work that wouldn't have been possible without the Scholars Program money - Florence remembers turning to her husband with tears in her eyes. "This is exactly what Amy wanted," she said. And so they'll keep asking. Because Amy did. The Amy Strelzer Manasevit Scholars Program for the Study of Post-Transplant Complications was established to fund research focused on clinical solutions for post-transplant complications for patients who have received a marrow transplant from an unrelated donor.
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